eHealth for people with dementia in home-based and residential care Nienke Nijhof Uitnodiging
Vrijdag 26 april 2013 14:45 uur Prof. dr. G. Berkhoff Zaal De Waaier (gebouw 12) Steeds meer mensen met dementie, maar steeds minder mensen eHealth for people with Universiteit Twente werkzaam in de zorg. Op korte termijn zijn maatregelen noodzakelijk om goede zorg te kunnen blijven bieden. eHealth kan hierbij ondersteunend dementia in home-based Voor de openbare verdediging zijn. and residential care van mijn proefschrift: In dit proefschrift wordt inzicht en advies gegeven voor de ontwikkeling eHealth for people with en implementatie van eHealth in dementiezorg. Na een inleidend dementia in home-based literatuuronderzoek met betrekking tot implementatie en evaluatie and residential care van eHealth in dementiezorg worden een viertal eHealth projecten in dementiezorg geëvalueerd. De gebruikte eHealth technologieën zijn in Om 14:30 uur zal ik een korte te delen in monitoring en sociaal contact technologiën. De monitoring presentatie geven over mijn technologie omvat een preventief sensorensysteem toegepast in onderzoek. de thuissituatie van de persoon met dementie en een horloge, dat Na afloop van de promotie het slaap- en waakritme meet van mensen met dementie in een bent u van harte welkom op verpleeghuissituatie. De sociaal contact technologie is een ondersteund de receptie ter plaatse. touchscreen in de thuissituatie en een spel waarbij gebruik wordt gemaakt van technologie om sociaal gedrag bij mensen met dementie Nienke Nijhof in de verpleeghuissituatie te bevorderen. De eerste resultaten van de Sternstraat 9 toepassing van eHealth in dementiezorg zijn positief: ondersteuning in 3582TC Utrecht welzijn van mensen met dementie en hun mantelzorgers, verbeteringen [email protected] in de zorgverlening en kostenbesparing door uitstel van opname. 0642754512 www.dementietechnologie.nl
Paranimfen: Maartje Zonderland [email protected] 0653313247
Anne Lunenburg [email protected] 0616828729
Route: www.utwente.nl/route ISBN: 978-90-365-3455-0 Nienke Nijhof gebouw 12 parkeren P2 eHealtH for people witH dementia in
home-based and residential care
Nienke Nijhof Dissertation, University of Twente, 2013 © Nienke Nijhof ISBN: 978-90-365-3455-0 DOI: 10.3990/1.9789036534550
With the support of Alzheimer Nederland (Amersfoort), dr. G.J. van Hoytema Stichting (Enschede), Focus Cura BV (Driebergen), Futurelab en Novartis Pharma BV (Arnhem).
Cover design by Milan Compeer Book design by Gildeprint Drukkerijen Printed by Gildeprint Drukkerijen, Enschede, the Netherlands
The studies presented in this thesis were financially supported by IBR Research Institute for Social Sciences and Technology and care organization Bruggerbosch. eHealtH for people witH dementia in
home-based and residential care
PROEFSCHRIFT
ter verkrijging van de graad van doctor aan de Universiteit Twente, op gezag van de rector magnificus, prof. dr. H. Brinksma, volgens besluit van het College voor Promoties in het openbaar te verdedigen op vrijdag 26 april 2013 om 14.45 uur
door
Nienke Nijhof geboren op 13 mei 1983 te Leiderdorp Dit proefschrift is goedgekeurd door de promotor, prof. dr. E.R. Seydel en door de assistent-promotor, dr. J.E.W.C. van Gemert-Pijnen samenstelling promotiecommissie
Promotor: Prof. dr. E.R. Seydel, Universiteit Twente
Assistent-promotor: dr. J.E.W.C. van Gemert-Pijnen, Universiteit Twente
Leden: Prof. dr. A. Sixsmith, Simon Fraser University, Vancouver, Canada Prof. dr. R.M. Dröes, VU Medisch Centrum, Amsterdam Prof. dr. M.C.P.M. Hertogh, VU Medisch Centrum, Amsterdam Prof. dr. M.G.M. Olde-Rikkert, Radboud Universiteit Nijmegen dr. ir. J. van Hoof, Fontys Hogescholen, Eindhoven Prof. dr. ir. H.J. Hermens, Universiteit Twente Prof. dr. ir. T. de Vries, Universiteit Twente
contents chapter 1. Introduction 9 chapter 2. Literature review: 29 Dementia and technology. A study of technology interventions in healthcare for people with dementia and their caregivers. chapter 3. Monitoring technology at home: 65 An evaluation of preventive sensor technology for dementia care. chapter 4. Monitoring technology residential care: 93 How assistive technology can support dementia care: a study about the effects of the IST Vivago watch on patients’ sleeping behavior and the care delivery process in a nursing home. chapter 5. Social contact technology at home: 121 A personal assistant to stay at home safe at reduced cost. chapter 6. Social contact technology residential care: 151 The use of a technology-based leisure activity to support social behavior of people with dementia. chapter 7. Conclusions and discussion 179 chapter 8. Practical guidelines 205
Samenvatting (Summary in Dutch) 215
Dankwoord (Acknowledgements in Dutch) 227 chapter 1
introduction Chapter 1
R1 R2 R3 R4 R5 R6 R7 R8 R9 R10 R11 R12 R13 R14 R15 R16 R17 R18 R19 R20 R21 R22 R23 R24 R25 R26 R27 R28 R29 R30 R31 R32 R33 R34
10 introduction R1 R2 Dementia is an umbrella term for different types of diseases whereby aperson R3 suffers from a serious loss of cognitive ability beyond what might be expected from R4 the normal aging process. Dementia affects a person’s memory, thinking, behaviour 1 R5 and ability to cope with everyday activities. Alzheimer’s disease is the most common R6 form of dementia, other types are frontotemporal dementia, vascular dementia and R7 dementia with Lewy bodies. There are over 50 different types of dementia in total R8 (1, 2). R9 R10 This thesis is about the use of eHealth for people with dementia (no restriction of R11 type). In this thesis we focus on the implementation of different eHealth applications, R12 including their uptake in terms of usage and usability, and the impact of these R13 applications on people with dementia and their caregivers (including relatives who R14 are caregivers). We also focused on the changes in the healthcare delivery process R15 which could occur through the use of eHealth technologies. eHealth might generate R16 cost savings in caring for people with dementia by giving them the extra support R17 they need to continue living in their own homes for a longer period of time instead R18 of having to go into residential care. This dissertation provides a starting point for R19 creating a business model for the use of eHealth applications in a home-based setting R20 for people with dementia. R21 R22 dementia worldwide R23 R24 Worldwide, an estimated 35.6 million people had dementia in 2010; this is0.5% R25 of the world’s total population. By 2050 an increase into 115.4 million is expected. R26 We all have a 20% chance of getting dementia during our lifetime. For women this R27 percentage is 30% because they have a tendency to grow older. The older people R28 become, the greater their chances of getting dementia. The percentage of people R29 over the age of 90 with dementia is 40% (1). People with dementia are more forgetful R30 than usual for their age and have different symptoms than normal older people. R31 People who go through the normal aging process are still able to carry out their daily R32 R33 R34
11 Chapter 1
R1 activities, but for people with dementia this becomes more and more of a challenge R2 (3). R3 R4 In 2010, 58% of all people with dementia lived in low and middle-income countries. R5 This figure is expected to rise to 71% in 2050. In 2010 the total worldwide estimated R6 costs of dementia were 604 billion dollars. Informal care (unpaid care provided by R7 family members and others) and the direct cost of social care (care in the community R8 and residential homes) contributes a similar proportion of these overall costs (42%), R9 in contrast to direct medical care costs, which only account for 16% of the total cost. R10 Based solely on the growing number of people with dementia, by 2030 these costs R11 will have increased by 85% (1). R12 R13 dementia in then etherlands R14 R15 According to the Dutch Alzheimer Society, there are currently 250,000 people with R16 dementia living in the Netherlands today. By 2050 this figure will most likely rise to R17 500,000 people because of the aging population. Even people under 65 years old R18 will start to have dementia: nowadays this number is around 12,000 (2). Conversely, R19 the International Society for Alzheimer Research states that the number of people R20 living with dementia in the Netherlands is currently 180,000 (4); a significantly R21 lower number than the Dutch Alzheimer Society. Yet, according to research findings R22 provided by general practitioners in the Netherlands, the number of people living R23 with dementia is more likely to be 81,000, while ERGO research from the Erasmus R24 Medical Centre in Rotterdam gives a much higher figure of 203,000 people (5). All in R25 all, these different figures show the lack of clarity and agreement about the actual R26 number of people with dementia in the Netherlands, which is mostly caused by R27 under diagnosis and estimation (6). R28 R29 The cost of caring for people with dementia in 2005 was 3.2 billion euro, which is R30 4.7% of the total cost of the Dutch healthcare system. Dementia ranks just under R31 having a mental disability as the most expensive disease in the Netherlands (7). R32 R33 R34
12 Overall, the number of professional caregivers should be 25% of the total number of R1 people working in 2025 in order to take care of the elderly and patients in need of R2 long-term care (8). This is not realistic in the Netherlands because of the expected R3 decrease in the number of people working from 68% now to 56% in 2030 (9). Alongside R4 the professional caregivers, a lot of care is provided by informal caregivers (usually 1 R5 family members). However, the majority of these informal caregivers experience R6 having to take care of their relative as a burden. In total, 64% of caregivers from R7 within the family experience taking care of their sick relative as a mild burden, with a R8 further 18% experiencing it as a heavy burden, which is 82% in total (10). R9 R10 daily life for people with dementia and their caregivers R11 R12 This chronic disease has an enormous impact on society. People with dementia R13 have several behavioural and mental problems according to Burns, Jacoby and Levy R14 (1990) (11-14). These include delusions, hallucinations, major depression, mania, R15 agitation/aggression, wandering and apathy. In addition to these mental problems, R16 the symptoms of dementia can also cause problems for the patients themselves as R17 well as their caregivers; especially symptoms such as memory loss and changes in R18 mood or behaviour (4). R19 R20 People with dementia also have their basic needs. Van der Roest et al. (2009) R21 interviewed 236 people with dementia who still lived in the community and322 R22 informal caregivers about their needs using the Camberwell Assessment of Need R23 for the Elderly (CANE). This is a semi-structured interview that investigates met R24 and unmet care needs and care use in 24 areas; including social, medical, and R25 psychological needs, and needs associated with the person’s (living) environment R26 (15). The unmet needs which are mentioned in this study by Van der Roest et al. R27 (2009) fall within the categories of memory, information, company, psychological R28 distress and daytime activities. The results could be used to improve community care R29 by focusing on these needs (16). R30 R31 R32 R33 R34
13 Chapter 1
R1 Caregivers think about the Instrumental Activities of Daily Living (IADL), Activities R2 of Daily Living (ADL) and safety issues in relation to their needs (17, 18). Other R3 studies related to the concerns of family caregivers specifically showed that their R4 main anxieties were in areas such as safety in the home, a lack of quality time for R5 themselves, the absence of meaningful activities for people with dementia, and R6 difficulties experienced with time orientation (19, 20). These differences between R7 the needs experienced by the caregivers themselves and those of the people with R8 dementia highlights the need to find a way to combine the needs of the caregiver R9 and the person with dementia to assist both of them in their daily life and work. It is R10 important to assist a person with dementia in their day-to-day life so that they can R11 live at home for as long as possible, but at the same time it is equally important to R12 reduce the burden on the caregiver as well in order to make it possible for the person R13 with dementia to live at home for as long as possible. R14 R15 Research into the field of needs of people with dementia that is directly related to R16 technology is rare. Wherton and Monk explored the problems of dementia in the R17 home and indentified day-to-day activities in everyday life where technology could R18 be supportive. The main support was needed in the following areas: dressing, taking R19 medication, maintaining personal hygiene, preparing food and socializing (21). R20 R21 The support required for those living with dementia brings about specific challenges R22 to the older person and those who care for them (22). Currently, community care R23 (informal and formal care for people with dementia in their own homes) does not R24 satisfy the more specific needs of people suffering from dementia and their caregivers, R25 which can result in increased distress, a loss of skills amongst older people, and the R26 caregiver having a breakdown (23). R27 R28 Nowadays, older people, including those with dementia, prefer to stay in their own R29 homes for as long as possible (24). The literature on aging-in-place suggests that the R30 home environment is a locus of meaning for the older person. Not only is the home R31 environment a place where they can retain a sense of independence and well-being, R32 it is also more cost-effective if a person is living at home for a longer period of time R33 due to the high costs of a nursing home (24). R34
14 The reasons given by caregivers for institutionalizing people with dementia were most R1 frequently incontinence, followed by withdrawal (acceptation of institution by the R2 family caregiver). The main problem was the dependence of the dementia patient on R3 the caregiver, with behavioural disorders taking second place in the list of problems R4 which led to institutionalization. Home-based care for people with dementia should 1 R5 focus on preventing any loss of autonomy for the patient with dementia by focusing R6 on the above-mentioned needs and should also give caregivers periods of relief to R7 lessen the burden on their shoulders (25). R8 R9 change needed in dementia care: ehealth R10 R11 The World Alzheimer Report (2010) concludes that we need to invest in both R12 research and cost-effective ways to care for people with dementia in the future in R13 order to cope with the expected increase in the number of people with dementia and R14 to manage the costs. Governments need to be sufficiently prepared for the future R15 and should start to look for new possibilities to improve the lives of people with R16 dementia and their caregivers (1). R17 R18 Focusing on the Netherlands, the Dutch Alzheimer Society mentions the use of R19 technology in their Dementia Care Standard 2012 (a document which describes good R20 quality care for people with dementia). They mention the possibility of people living R21 in their own homes for as long as possible with the help of technology (26). R22 R23 There is widespread recognition that innovative approaches are required to meet R24 the demands that will be placed upon formal and informal care systems in the future R25 (27) and to promote the independence and well-being of an aging population. The R26 emergence of eHealth is one such innovative approach. In this thesis we will talk R27 about eHealth. eHealth itself covers a broad spectrum of technologies. Eysenbach R28 defined eHealth in 2001 as follows: “eHealth is an emerging field in the intersection R29 of medical informatics, public health and business, referring to health services and R30 information delivered or enhanced through the Internet and related technologies. In R31 a broader sense, the term characterizes not only a technical development, but also R32 R33 R34
15 Chapter 1
R1 a state-of-mind, a way of thinking, an attitude, and a commitment for networked, R2 global thinking, to improve health care locally, regionally, and worldwide by using R3 information and communication technology”(28). However, eHealth is much more R4 than simply a tool; it is a holistic way to support healthcare via technology. The R5 interdependencies between system, content, context, and stakeholders should R6 therefore always be taken into account (29). Consequently, in the case of healthcare R7 for people with dementia, an investigation will be carried out into how best to R8 support the patients in their day-to-day environment, taking into account their needs R9 and the way in which the healthcare delivery process (home-based care/residential R10 care) has been structured. R11 R12 low impact and low sustainability for ehealth R13 R14 Generally, there is a lack of scientific evidence about the impact of eHealth in R15 healthcare (30-32). But more importantly many eHealth technologies are not doing R16 well in realizing sustainable innovations in healthcare practices (32, 33). Sustainability R17 means the way in which the eHealth application is sustained or embedded into an R18 organization’s day-to-day routine (34). This low sustainability for eHealth in general R19 has a lot to do with poor implementation (33, 34). R20 R21 Mair et al. (2007) described the key barriers that can prevent eHealth from being R22 implemented successfully. These included: inadequate information management, R23 inadequate inter-agency cooperation, intrusive technology/rigidity of system, cost, R24 and a lack of testing systems (35). There is a narrow focus on the implementation R25 of eHealth, with little attention paid to the impact of new eHealth technologies on R26 the workload, inter-professional relationships and the communication between R27 caregivers and patients (36). For the successful development and implementation of R28 eHealth technologies it is important to know about the day-to-day lives and needs of R29 the people involved: how do they live their lives on a day-to-day level and manage R30 their health and well-being? At the same time, it is also important to look at the R31 people around them such as relatives and professional caregivers and their capacity R32 to work with technology. Nowadays not all of the people involved (stakeholders) make R33 R34
16 a contribution towards the development and implementation of eHealth. Adequate R1 management of the eHealth implementation process within the healthcare setting is R2 often absent (30, 31, 37, 38). R3 R4 There are very little conclusive data available about the impact of eHealth on 1 R5 people with dementia in particular, and the sustainability of eHealth technologies in R6 healthcare practice is generally low. R7 R8 Although evidence about the impact of eHealth technologies is still scarce, some R9 evidence does exist. Research indicates that technology may provide a useful tool for R10 supporting people with dementia within the home environment, thereby reducing R11 the burden of care on the caregivers, while encouraging patient education and self R12 management (39, 40). Research has also demonstrated that the use of technology R13 within the home environment is more effective at supporting people with dementia R14 and their caregivers by promoting independent living, earlier identification of R15 problems, and improved self-monitoring (39, 41-45). Within a residential care setting R16 too, eHealth can have a positive effect by providing support to the professional R17 caregivers, boosting efficiency, ensuring a higher quality of life for the residents, R18 reducing the number of incidents of falling down by residents and giving them more R19 opportunities to move around freely (46-49). R20 R21 The market for technology in the area of caring for people with dementia is R22 still undeveloped and the healthcare industry has just recently begun to apply R23 technological developments to dementia care (50). R24 R25 More research into the implementation, uptake, and impact of eHealth in dementia R26 care is necessary. R27 R28 R29 R30 R31 R32 R33 R34
17 Chapter 1
R1 aim and scope of the thesis R2 R3 Van Gemert et al. (2011) suggests a holistic view on the use of eHealth, which consists R4 of a combined focus on the human characteristics and socio-economic, cultural R5 and technology factors altogether (29). In the CeHRes roadmap a holistic approach R6 for research into, and the development of, eHealth is described from the very first R7 steps in the design process to the final stages of assessing the effect and uptake of R8 eHealth. This holistic approach is needed to ensure that eHealth is actually used by R9 the intended target group and that its outcome is effective. In this thesis we focus R10 on the implementation, uptake related to actual usage and usability. eHealth impact R11 should be measured to assess whether the intended and unintended objectives of R12 the eHealth technology are realized. R13 R14 R15 R16 R17 R18 R19 R20 R21 R22 R23 Figure 1 CeHRes Roadmap R24 R25 In this research we focused on the operationalization aspect, specifically the execution R26 of the implementation plan and the summative evaluation which can be divided R27 into uptake and impact. The operationalization phase involves the launch of the R28 eHealth technology in day-to-day practice and the execution of the implementation R29 plan. In the summative evaluation we examine in greater detail the extent to which R30 the implementation plan was realized successfully. The reason for focussing on the R31 summative evaluation is the fact that the eHealth technologies, which were used R32 in the different studies, were already developed and commercially available. The R33 R34
18 main topics in this study’s summative evaluation are related to the uptake: usage R1 behaviour and usability of the eHealth technology used and its impact: healthcare R2 delivery, patient well-being, the well-being of family caregivers, and cost-savings. R3 R4 With this thesis we want to present the implications for the development and 1 R5 implementation of eHealth applications for people with dementia in home-based R6 and residential care, focusing on monitoring and social contact technology. These R7 implications are meant for eHealth implementers. R8 R9 outline of the thesis R10 R11 This dissertation presents an overview of the research which has already been carried R12 out in the combined field of dementia and technology. A literature review has been R13 conducted into the use of technology in residential care and in people’s own homes. R14 In this review three types of technology were mentioned; namely, technology to help R15 patients and their caregivers to cope with the symptoms of dementia, monitoring R16 technology, and technology to support social contact (41). R17 Another differentiation in technology is the three generations of technology for R18 supporting older people. The first generation is the community alarm system which R19 provides the elderly person with the option to contact a call centre or caregiver R20 whenever they are in need of assistance; the second generation uses sensors to R21 detect potential emergency situations such as a fall or environmental hazard and R22 summon help without action on the part of the user. The third and last generation, R23 also known as ambient assisted living, involves the application of devices that can be R24 integrated within everyday living contexts to provide a wide range of services, help R25 and support to senior citizens, who may require assistance in order to continue living R26 independently (for example, sensors such as ADLife) (51). R27 R28 In this thesis we made a combination of these differentiations with signalling R29 (generates an alarm when a dangerous situation occurs), monitoring (registers R30 behaviour patterns of people) and social contact (related to social behaviour) R31 technology. The lack of use in healthcare practice and the absence of scientific R32 R33 R34
19 Chapter 1
R1 research was greater in the field of monitoring and social contact technology than R2 with signalling technology. The use of signalling technology, like sensor technologies R3 that send out alarm signals, was used more than the other two technologies and R4 so more research has already been done in this field. In this thesis the focus is on R5 the technologies used for monitoring and stimulating social contact, also because of R6 the positive impact and outcomes for these two categories of technologies on the R7 patients’ quality of life and behaviour. R8 R9 Secondly, we carried out a summative evaluation for four technology projects in R10 dementia care ranging from commercially available products to research into the R11 impact of the use of eHealth for people with dementia. These studies are used to R12 provide insights into whether the eHealth technologies are sustainable. The overall R13 purpose is to provide insights into the use of eHealth for people with dementia, R14 acquire a better understanding of the uptake and impact, but most importantly, R15 highlight the implications and practical guidelines. These guidelines are intended R16 to help with developing and implementing sustainable eHealth technology in both R17 home-based and residential care for people with dementia. R18 R19 Two of these projects were carried out in a residential care home using monitoring R20 and social contact technology. Two of the projects were carried out within the R21 patients’ own homes; also one project with monitoring technology and one with R22 social contact technology. For the operationalization phase we focused on the R23 execution of the implementation plan and during the summative evaluation the R24 focus was on the uptake and impact of these technologies. Because a person with R25 dementia lives for most of the time in their own home and later in residential care, R26 both of these settings are important for the person with dementia. Therefore, in R27 this thesis we examine both of these environments. We organized the chapters in R28 this thesis according to the type of technology used. Therefore, the first chapters R29 will focus on eHealth technologies used to monitor patients with dementia while R30 the subsequent chapters will be about eHealth technology used to enhance social R31 contact. R32 R33 R34
20 The overall research questions are: R1 R2 1. What kind of eHealth applications are used for people with dementia? R3 (Literature review) R4 1 R5 Operationalization: implementation (empirical studies) R6 2. Which activities have been undertaken in order to implement eHealth in R7 dementia care? R8 R9 Summative evaluation: uptake: usage and usability (empirical studies) R10 3. What level of uptake has eHealth had in caring for people with dementia in R11 relation to usage and usability? R12 R13 Summative evaluation: impact: well-being, healthcare delivery and cost savings R14 (empirical studies) R15 4. What impact has eHealth had on the well-being of both the person with R16 dementia and the caregiver, overall healthcare delivery, and cost savings? R17 R18 Implications (empirical studies) R19 5. Which implications can be described for the development and R20 implementation of eHealth technology in home-based and residential care? R21 R22 The terms used in these research questions can be operationalized in the following R23 ways. The research questions for usage in this research are related to actual usage, R24 while for usability they are about the user-friendliness of the technology. For the R25 research questions about impact, the healthcare delivery is related to healthcare R26 interventions (for example, a change in medication) and support for the caregiver R27 (for example, having contact with the patient through video instead of personal R28 house visits). Well-being is related to something that is ultimately good for a person R29 (52). The cost savings in this study are related to someone living at home who R30 receives home-based care assisted by eHealth technology instead of having to go R31 into residential care. R32 R33 R34
21 Chapter 1
R1 To address these questions we used a mixed-method design. R2 For the first research question we used a literature review. R3 For the second research question related to the implementation phase we applied R4 a qualitative design and interviews and focus group sessions were carried out with R5 members of the family and professional caregivers. R6 For the third research question, which relates to the uptake of the eHealth application, R7 we used qualitative data (such as interviews with the family and professional R8 caregivers and observations from people with dementia) and quantitative data (such R9 as log files and monitoring data). R10 For the fourth research question we collected qualitative data such as interviews R11 and focus group sessions with family members and professional caregivers again. R12 Quantitative data were collected as well, such as observations from people with R13 dementia with bootstrapping techniques, monitoring data and cost data. R14 In all of our four (4) studies with different technologies, research questions are R15 answered and the results from these four (4) studies are combined in the conclusion R16 and discussion section of this thesis. From the results of these four empirical studies R17 we give practical guidelines for the further development and implementation of R18 eHealth in caring for people with dementia. R19 R20 introduction R21 Chapter 2: Literature review R22 Dementia and technology. A study of technology interventions in healthcare for R23 people with dementia and their caregivers. R24 Chapter 2 consists of a literature review carried out in 2009 into how different R25 kinds of technology can support healthcare for people with dementia. This provides R26 an answer to the research question about eHealth applications that have already R27 been used. The literature review included 18 international and 8 national studies. R28 Three categories of technology can be distinguished: (1) help with the symptoms R29 of dementia (signalling technology), (2) social contact and company for the patient, R30 and (3) health monitoring and safety. The results of these studies were described R31 using the following categories: behavioural effects, quality of life, job satisfaction, R32 user satisfaction, operational technology, costs and cost savings. R33 R34
22 empirical studies R1 Chapter 3: Monitoring technology in the home R2 An evaluation of preventive sensor technology for dementia care. R3 Chapter 3 explores the use of the ADLife preventive sensor technology system. R4 The ADLife preventive technology system is a commercially-available monitoring 1 R5 technology, designed as an early warning system for older people with dementia R6 living at home to detect problems before they require emergency help. The ADLife R7 comprises a gateway with an alarm button and different sensors, which register the R8 pattern of a person’s behaviour within their own home. The professional caregiver R9 from the nursing home taking part contacts the person with dementia or the R10 contact person within the family if changes in activity occur which might indicate R11 a dangerous situation. The research questions were related to the implementation R12 and uptake of the ADLife system; usage, usability, and impact of the ADLife system; R13 care interventions, well-being and cost savings. A mixed-method approach was used, R14 involving interviews with professional and family caregivers, researcher observations R15 during project group meetings, analysis of nurses’ diaries, and a cost analysis. R16 R17 Chapter 4: Monitoring technology residential care R18 How assistive technology can support dementia care: a study about the effects of R19 the IST Vivago watch on clients’ sleeping behaviour and the care delivery process in R20 a nursing home. R21 Chapter 4 presents the use of the IST Vivago Watch in a residential care home for R22 older people. This watch can measure the sleep and wake patterns of an individual R23 by measuring their movement, skin temperature and skin conductivity. The watch R24 was used for people with dementia who exhibited a disturbed sleep/wake rhythm. R25 The main purpose of this study was to gain insights into the uptake and impact of the R26 watch on the sleep/wake rhythm and on the healthcare delivery process of patients R27 with dementia. The research questions focus on the implementation, uptake, its R28 usage, and usability. The impact was measured by the interventions that have been R29 carried out based on using the watch and the effects of these interventions on the R30 sleeping patterns of the patients. These questions were answered using a mixed- R31 method design: monitoring data about the sleep/wake rhythm, keeping a diary R32 R33 R34
23 Chapter 1
R1 about usage and care interventions related to the monitoring data, observations, R2 and in-depth interviews with caregivers about the implementation and usage of the R3 watch. R4 R5 Chapter 5: Social contact technology at home R6 A personal assistant for dementia to stay at home safe at reduced cost R7 Chapter 5 describes the use of a touch screen, PAL4, for people with dementia. PAL4 R8 (personal assistant for life) is a touch screen which shows people with dementia an R9 agenda for their day, a diary, a life album and a so-called PAL4 button. In this PAL4 R10 button more information can be found such as memory games to play, information R11 about their disease, information about the neighbourhood in which they currently R12 live. PAL4 is used as a supportive and social contact technology. One of the features R13 of PAL4 is also making video contact with the family caregiver or the professional R14 caregiver. The research questions were related to the implementation and uptake R15 of the PAL4 system; its usage, usability and impact, healthcare delivery, well-being R16 and cost savings. A mixed-method design was used using log files, interviews with R17 caregivers from within the family, a focus group made up of professional caregivers, R18 observations from the project group meetings, and a cost analysis. R19 R20 Chapter 6: Social contact technology residential care R21 The use of a technology-based leisure activity to support the social behaviour of R22 people with dementia R23 Chapter 6 explains the use of the technology-supported, social leisure activity R24 known as the Chitchatters. The Chitchatters intend to stimulate social interaction R25 and behaviour among people with dementia. The activity includes four interactive R26 objects: a television, radio, telephone and treasure chest, each of which triggers R27 memories in its own specific way. In this study the focus is on the impact of the R28 Chitchatters on the social behaviour of people with dementia and its supportive role R29 in the work of activity therapists. In addition, this study focuses on the uptake related R30 to the key factors for usability of the Chitchatters in residential care and for day-care R31 purposes. A mixed-method research design was applied, with observations using the R32 Oshkosh Social Behaviour Coding scale, whereby the statistical method known as R33 R34
24 bootstrapping was used because of the small sample size (n=10 participants, multiple R1 rounds of observations), as well as interviews with the activity therapists. R2 R3 conclusions and practical guidelines R4 Chapter 7: Conclusions and discussion 1 R5 In chapter 7, a reflection on the major findings and conclusions of the studies reported R6 in this thesis are discussed. The implications for the use of eHealth technologies in R7 dementia care and future research are described. R8 R9 Chapter 8: Practical guidelines R10 In this chapter we present practical guidelines for eHealth implementers. These R11 guidelines are related to the development and implementation of eHealth R12 technologies. R13 R14 R15 R16 R17 R18 R19 R20 R21 R22 R23 R24 R25 R26 R27 R28 R29 R30 R31 R32 R33 R34
25 Chapter 1
R1 references R2 R3 1. Wimo A, Prince M. World Alzheimer Report. London: Alzheimer’s Disease International, 2010. R4 2. Alzheimer Nederland. Informatie Dementie. Bunnik: Alzheimer Nederland; 2012 [cited R5 2012 January 9]; Available from: http://www.alzheimer-nederland.nl/informatie/wat- is-dementie/dementie.aspx. R6 3. American Medical Association. Differentiating Normal Aging and Dementia. American Medical Association; n.d. [cited 2012 August 16]; Available from: http://www.ama- R7 assn.org/resources/doc/public-health/aging_vs_dementia.pdf. R8 4. Alzheimer’s disease international. About Alzheimer’s Early symptoms. 2008 [cited 2010 June 13]; Available from: http://www.alz.co.uk/alzheimers/symptoms.html. R9 5. van der Meulen A, Keij-Deerenberg I. Sterfte aan dementie. Den Haag: Centraal Bureau R10 voor Statistiek; n.d. [cited 2012 August 16]; Available from: http://www.cbs.nl/NR/ rdonlyres/57D8293E-8EA9-4B53-B8C1-04DDEDFE1C00/0/2003k2b15p024art.pdf. R11 6. de Lange J, Poos MJJC, Schoemaker C. Hoe vaak komt dementie voor en hoeveel R12 mensen sterven eraan? Bilthoven: Rijksinstituut voor Volksgezondheid en Milieu; 2010 [cited 2012 August 16]; Available from: http://www.nationaalkompas.nl/gezondheid- R13 en-ziekte/ziekten-en-aandoeningen/psychische-stoornissen/dementie/omvang/. 7. Rijksinstituut voor Volksgezondheid en Milieu. Kosten van ziekten. Bilthoven R14 2005 [updated 26 June, 2008; cited 9 January 2012]; Available from: http://www. R15 kostenvanziekten.nl/kvz2005/kosten-naar-diagnose/psychische-stoornissen/. 8. Centraal Bureau voor de Statistiek. Gezondheid en zorg in cijfers 2009. Den Haag: R16 Centraal Bureau voor de Statistiek; 2009 [updated December 4, 2009; cited 2012 R17 October 1]; Available from: http://www.cbs.nl/nl-NL/menu/themas/gezondheid- welzijn/publicaties/publicaties/archief/2009/2009-c156-pub.htm. R18 9. Centraal Bureau voor de Statistiek. Afname potentiële beroepsbevolking begint. R19 Den Haag: CBS; 2007 [cited 2012 July 24]; Available from: http://www.cbs.nl/NR/ rdonlyres/4CB9E5E3-357E-4A95-8221-F2F31F4CB12D/0/pb07n008.pdf. R20 10. Francke A. Mantelzorg voor dementiepatienten onverminderd zwaar. Utrecht: R21 Nivel; 2009 [cited 2012 9 January]; Available from: http://www.nivel.nl/oc2/page. asp?PageID=12895. R22 11. Burns A, Jacoby R, Levy R. Psychiatric phenomena in Alzheimer’s disease, I: Disorders of thought content. The British Journal of Psychiatry. 1990;157(1):72-6. R23 12. Burns A, Jacoby R, Levy R. Psychiatric phenomena in Alzheimer’s disease, II: Disorders R24 of perception. The British Journal of Psychiatry. 1990;157(1):76-81. 13. Burns A, Jacoby R, Levy R. Psychiatric phenomena in Alzheimer’s disease, III: Disorders R25 of mood. The British Journal of Psychiatry. 1990;157(1):81-6. R26 14. Burns A, Jacoby R, Levy R. Psychiatric phenomena in Alzheimer’s disease, IV: Disorders of behavior. The British Journal of Psychiatry. 1990;157(1):86-94. R27 15. Reynolds T, Thornicroft G, Abas M, Woods B, Hoe J, Leese M, Orrell M. Camberwell R28 Assessment of Need for the Elderly (CANE): development, validity and reliability. British Journal of Psychiatry. 2000;176(5):444-52. R29 16. van der Roest HG, Meiland FJ, Comijs HC, Derksen E, Jansen AP, van Hout HP, Jonker R30 C, Dröes RM. What do community-dwelling people with dementia need? A survey of those who are known to care and welfare services. International Psychogeriatrics. R31 2009;21(21):949-65. 17. Kirsi T, Hervonen A, Jylha M. Always One Step Behind: Husbands’ Narratives about R32 Taking Care of their Demented Wives. Health (London). 2004;8(2):159-81. R33 R34
26 18. Pollitt PA, Andersont I, D.W. OC. For better or for worse: The experience of caring for an elderly dementing spouse. Ageing and Society. 1991;11(4):443-69. R1 19. Bank AL, Arguelles S, Rubert M, Eisdorfer C, Czaja SJ. The value of telephone R2 support groups among ethnically diverse caregivers of persons with dementia. The Gerontologist. 2006;46(1):134-8. R3 20. Nolan M, Ingram P, Watson R. Working with family carers of people with dementia. R4 Dementia. 2002;1(1):75-93. 21. Wherton J, Monk A. Technological opportunities for supporting people with dementia R5 who are living at home. Journal of Human Computer Studies. 2008;66(8):571-86. 1 R6 22. Brown J, Hillan J. Dementia. Edinburgh: Churchill Livingstone; 2004. 23. Bamford C, Bruce E. Defining the outcomes of community care: the perspectives of R7 older people with dementia and their carers. Ageing and Society. 2000;20(5):543-70. 24. Tinker A. Housing for elderly people. Reviews in Clinical Gerontology. 1997;7(2):171-6. R8 25. Thomas P, Ingrand P, Lalloue F, Hazif-Thomas C, Billon R, Viéban F, Clément JP. Reasons R9 of informal caregivers for institutionalising dementiati pa ents previously living at home: the Pixel study. International Journal of Geriatric Psychiatry. 2004;19(2):127-35. R10 26. Alzheimer Nederland, Vilans. Zorgstandaard dementie. Bunnik: Alzheimer Nederland; R11 2012 [cited 2012 July 24]; Available from: http://www.alzheimer-nederland.nl/ media/11405/Zorgstandaard%20Dementie%20PDF.pdf. R12 27. Bharucha AJ, Anand V, Forlizzi J, Dew MA, Reynoalds CF, Stevens S, Wactlar H. Intelligent R13 Assistive Technology Applications to Dementia Care: Current Capabilities, Limitations and Future Challenges. American Journal of Geriatric Psychiatry. 2009;17(2):88-104. R14 28. Eysenbach G. What is eHealth? Journal of Medical Internet Research. 2001;3(2):e20. 29. Van Gemert-Pijnen JEWC, Nijland N, Ossebaard HC, van Limburg AH, Kelders SM, R15 Eysenbach G, Seydel ER. A holistic framework to improve the uptake and impact of R16 eHealth technologies. Journal of Medical Internet Research. 2011;13(4):e111. 30. WHO. Medical devices: managing the mismatch. Geneva, Switzerland: World Health R17 Organization, 2010. R18 31. Black AD, Car J, Pagliari C, Anandan C, Cresswell K, Bokun T, McKinstry B, Procter R, Majeed A, Sheikh A. The impact of eHealth on the quality and safety of health care: a R19 systematic overview. PLoS Medicine. 2011;8(1):1-16. R20 32. Atienza AA, Hesse BW, Gustafson DH, Croyle RT. E-health research and patient-centered care examining theory, methods, and application. American Journal of Preventive R21 Medicine. 2010;38(1):85-8. R22 33. Nijland N. Grounding eHealth. Towards a holistic framework for sustainable eHealth technologies [Dissertation]. Enschede: University of Twente; 2011. R23 34. Greenhalgh T, Robert G, Bate P, Kyriakidou O, Macfarlane F, Peacock R. How to Spread Good Ideas. A systematic review of the literature on diffusion, dissemination and R24 sustainability of innovations in health service delivery and organisation. London: R25 National Health Service,2004. 35. Mair FS, May C, Finch T, Murray E, Anderson G, Sullivan F, O’Donnell C, Wallace P, R26 Epstein O. Understanding the implementation and integration of e-health services. R27 Journal of Telemedicine and Telecare. 2007;13 (1):36-7. 36. Mair FS, May C, Murray E, Finch T, Anderson G, O’Donnell C, Wallace P, Sullivan F. R28 Understanding the implementation and integration of e-Health Services. London: R29 National Health Service and Delivery R & D Organisation,2009. 37. Resnicow K, Strecher V, Couper M, Chua H, Little R, Nair V, Polk TA, Atienza AA. R30 Methodologic and design issues in patient centered eHealth research. American R31 Journal of Preventive Medicine. 2010;38(1):98-102. 38. Cain M, Mittman R. Diffusion of Innovation in Health Care. Oakland: California R32 HealthCare Foundation, 2002. R33 R34
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39. Cahill S, Begley E, Faulkner JP, Hagen I. ‘’It gives me a sense of independence’’- R1 Findings from Ireland on the use and usefulness of assistive technology for people R2 with dementia. Technology and Disability. 2007;18(2-3):133-42. 40. Carswell W. A review of the role of assistive technology for people with dementia in R3 the hours of darkness. Technology Health Care. 2009;17(4):281-304. R4 41. Lauriks S, Reinersmann A, van der Roest HG, Meiland FJ, Davies RJ, Moelaert F, Mulvenna MD, Nugent CD, Dröes RM. Review of ICT based services for identified R5 unmet needs in people with dementia. Aging Research Reviews. 2007;6(3):223-46. R6 42. Topo P. Technology studies to meet the needs of people with dementia and their caregivers. A literature review. Journal of Applied Gerontology. 2009;28(1):5-37. R7 43. Duff P, Dolphin C. Cost-benefit analysis of assisitive technology to support independence for people with dementia - Part 2: Results from employing the ENABLE cost- benefit R8 model in practice. Technology and Disability. 2007;19(2):79-90. R9 44. Cahill S, Macijauskiene J, Nygård AM, Faulkner JP, Hagen I. Technology in dementia care. Technology and Disability. 2007;19(2-3):55-60. R10 45. Nijhof N, van Gemert-Pijnen JEWC, Dohmen D, Seydel ER. Dementie en technologie. R11 Een studie naar toepassingen van techniek in de zorg voor mensen met dementie en hun mantelzorgers. Tijdschrift voor Gerontologie en Geriatrie. 2009;40(3):113-32. R12 46. Nouws H, Sanders L, Heuvelink J. Domotica voor dementerenden. De eerste ervaringen R13 in het Leo Polakhuis te Amsterdam en het Molenkwartier te Maassluis. Amersfoort, 2006. R14 47. Lauriks S, Osté JP, Hertogh CMPM, Dröes RM. Effectenonderzoek naar de toepassing van domotica in kleinschalige groepswoningen voor mensen met dementie. Amsterdam: R15 GGD, 2008. R16 48. Vilans. Kerkrade: Groepswoningen/ verpleeghuis Lückerheide. Utrecht: Vilans; 2008 [cited 2012 July 24]; Available from: www.domoticawonenzorg.nl. R17 49. Engstrom M, Ljunggren B, Lindqvist R, Carlsson M. Staff perceptions of job satisfaction R18 and life situation before and 6 and 12 months after increased information technology support in dementia care. Journal of Telemedicine and Telecare. 2005;11(6):304-9. R19 50. Sixsmith A. New technologies to support independent living and quality of life for R20 people with dementia. Alzheimer’s Care Quarterly 2006;7(3):194-202. 51. Sixsmith A, Sixsmith J. Ageing in place in the United Kingdom. Ageing International. R21 2008;32(3):219-35. R22 52. Crisp R. Well being. Stanford: MetaPhysics Research Lab, Stanford University; 2008 [cited 2012 August 30]; Available from: http://plato.stanford.edu/entries/well-being/. R23 R24 R25 R26 R27 R28 R29 R30 R31 R32 R33 R34
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literature review
dementia and technology. a study of technology interventions in healthcare for people with dementia and their caregivers
Based on: Nijhof N, van Gemert-Pijnen JEWC, Dohmen D, Seydel ER. Dementie en technologie. Een studie naar toepassingen van techniek in de zorg voor mensen met dementie en hun mantelzorgers. Tijdschrift voor Gerontologie en Geriatrie. 2009;40 (3):113-32. doi: 10.1007/BF03079573 Chapter 2
R1 abstract R2 R3 Objective:To explore the possibilities of using technological interventions in dementia R4 care in order to make sound decisions about the added value of using technological R5 applications in healthcare in the future. R6 R7 Methodology: An inventory was made of all the international and national studies R8 that focus on the implementation and evaluation of technological interventions to R9 help patients with dementia and their caregivers. Three categories of technology R10 were examined in this inventory, namely technology that helps patients and their R11 caregivers to cope with the symptoms of dementia, technology that supports the R12 patients’ need for social contact and companionship, and technology that is used to R13 monitor and safeguard the health and safety of patients with dementia. R14 R15 Results: Eighteen international and eight national studies were included. The first R16 results of using technological interventions to care for patients with dementia look R17 promising. Significant improvements have been seen with regard to the patients’ R18 quality of life and the effect that the technology has had on the patients’ behaviour R19 (such as fewer reported incidents of falling down). The informal caregivers and people R20 with dementia are satisfied with the usability of the technology. However, the cost of R21 procuring and applying the technology is often too high. So far, no in-depth research R22 has been carried out into the level of satisfaction among professional caregivers with R23 regard to the use of technology. R24 R25 Conclusion: Although technology can improve a patient’s ability to cope independently R26 with some of the effects of dementia, the impact of technology on the daily lives R27 of dementia patients, informal caregivers and professional caregivers has not been R28 studied extensively. Further research will focus on the effect of technology on R29 people suffering from dementia and their caregivers in terms of improvements to R30 their quality of life, an enhanced sense of personal safety and greater degree of job R31 satisfaction, respectively. R32 R33 R34
30 dementia and technology R1 R2 In recent years there have been significant advancements in the use of technology to R3 support healthcare for patients with dementia. The focus has been on technological R4 interventions geared towards reducing the need for care by increasing the ability of R5 the patient with dementia to cope on their own, thereby supporting the caregiver. R6 R7 This technology can be divided in three different groups: technology that is used 2 R8 by the patients with dementia, technology that is used by the caregivers, and R9 technology that works automatically (1, 2). The technology that works automatically, R10 without any external intervention, is also called “ambient intelligence”. Loosely R11 translated, ambient intelligence is a form of invisible, intelligent technology that R12 goes unnoticed by the patients in their home. Intelligent technology uses software R13 that interprets situations by using incoming signals from sensors (3). For example, a R14 sensor on the fridge door that registers whether the fridge has remained closed for R15 too long, thereby implying that the patient may not have eaten for some time. At R16 that moment, the sensor transmits an alarm to a caregiver. R17 R18 To date, no literary overview has been compiled in the Netherlands about the R19 different technology applications that are being used to help people with dementia, R20 and the effect that these applications are having on them, their informal caregivers R21 and their professional caregivers. This article strives to provide such an overview with R22 a view to advocating the deployment of technology to assist people with dementia. R23 R24 A literature review involving a quick scan was the method selected to conduct research R25 for this article. This was because, to date, very little empirical research has been R26 carried out into the use of technology to help people with dementia. Consequently, a R27 systematic review is not yet feasible in the Netherlands. There are currently too few R28 completed projects that have gone through the necessary evaluation and publication R29 procedure. By a ‘quick scan’, we mean a global scan of all the available (empirical) R30 literature. This literature review aims to give some preliminary insights into the R31 type of projects that are currently being carried out in the Netherlands for people R32 R33 R34
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R1 with dementia, and to provide a snapshot of the effect that technology is having on R2 patients’ self-reliance and how healthcare is organized for people with dementia. R3 The following questions are central to this: “What technologies are around at the R4 moment?” “What do these technologies do?” “Which technologies are applied R5 widely in the Netherlands?” “What effects have already been found in people R6 with dementia and informal caregivers?” The Dutch situation is compared with the R7 international situation, where already a lot more experience has been acquired R8 about these types of technology. R9 R10 One of the few previous review studies is carried out by Lauriks et al. (2007), which R11 focused on the use of Information and Communication Technology (ICT) for people R12 with dementia (4). However, the authors did not focus specifically on the Dutch R13 situation and it was only recently (after the study by Lauriks et al. had already ended) R14 that some other studies were also published in the Netherlands. The review by R15 Lauriks et al. focuses on the technology needs of people with dementia and their R16 family caregivers, which originated from an earlier needs assessment carried out R17 among patients with dementia and their volunteer caregivers, including: R18 - The need for general and personal information R19 - The need for help with the symptoms of dementia R20 - The need for social contact and companionship R21 - The need for monitoring health and safety. R22 The main findings were that while websites do indeed provide useful information for R23 caregivers, they offer very little information to the patients who are actually suffering R24 from dementia and the websites that were investigated provided very little personal R25 information (such as noting down one’s own doctor’s appointments). R26 R27 The study by Lauriks et al. (2007) cited above shows that ICT tools help to reduce R28 the limitations of people with dementia (such as memory loss and the difficulties R29 they encounter when trying to carry out day-to-day tasks), enhance the patients’ R30 confidence and have a generally positive impact on the lives of patients with dementia R31 and their caregivers. This has been demonstrated in patients with mild to moderately R32 severe dementia who are able to handle simple electronic tools. One example of this R33 R34
32 is a handheld computer that registers when a patient needs to take their medication R1 and emits a signal at the designated time. R2 R3 Information and communication technology (ICT) tools that are used to promote R4 social contact and companionship such as the video phone, simple mobile phones, R5 and robotic toys that can play games, for example, reveal more about the activities R6 and forms of communication carried out by patients with dementia. These tools R7 for social contact and companionship seem easy to use. People with dementia also 2 R8 appear to like using them. GPS technology and monitoring systems appear to provide R9 an increasing sense of safety and reduce feelings of fear and anxiety. R10 R11 The results of the studies described in Lauriks’ review are promising. Nevertheless, R12 the review also clearly indicates that more studies are needed in a ‘real life’ situation R13 (4). In this literature review we will delve deeper into three of the technology R14 requirements listed above, namely: R15 - The need for help with the symptoms of dementia R16 - The need for social contact and companionship R17 - The need to monitor health and safety. R18 R19 The first category listed by Lauriks et al. (4), “The need to make general and personal R20 information available through a website” is not considered here. R21 R22 method R23 R24 Publications were collected for this literature review between May and August 2008. R25 All of the publications focused on empirical research into technological interventions R26 for people with dementia or their informal/professional caregivers. No restrictions R27 were put in place in terms of the quality of the studies; this was partly because R28 research into technology for people living with dementia is still very limited. In R29 this literature review the emphasis is on the behavioural effects of the technology R30 interventions, and research in this area is still rare. Articles that focused on problems R31 other than dementia were excluded from the review, as were articles that described R32 R33 R34
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R1 how the technology functioned in practice and where no evaluation was performed. R2 Scientific publications and reports from 1998 to 2008 were included in this literature R3 review. R4 R5 The following electronic databases were consulted: Science Direct, Google Scholar, R6 PiCarta and the website of a Centre of Expertise (Vilans) in the Netherlands that R7 specialises in providing care in this area. The keyword combinations that are used, R8 both in Dutch and in English, are ‘dementia’ in combination with ‘technology’, ‘IT’, R9 ‘telecare’, ‘telemedicine’, ‘telehealth’ and ‘telemonitoring’. The articles were then R10 examined based on the following indicators: effects on behaviour, quality of life, job R11 satisfaction, user satisfaction, how the technology functioned in practice, and the R12 cost and savings that were made. R13 R14 results R15 R16 A total of forty (40) studies were identified, out of which twenty-six (26) remained R17 after all the abstracts had been read. In the end, eighteen (18) international and R18 eight (8) national studies that complied with the criteria, see tables 1 and 2, were R19 included. With regard to the international studies, a worldwide search was carried R20 out for projects that focused on one of the three categories of technology. In the R21 case of the national studies, a systematic search was carried out for any projects that R22 focused on evaluating health and safety for dementia patients, because these have R23 been researched in more detail in the Netherlands. The information in the tables has R24 been divided into four categories, namely: ‘’reference, country, year and length of the R25 intervention’’, ‘’study setting and technology requirements’’, ‘’study set-up, inclusion R26 criteria and methods’’ and finally ‘’results’’. Furthermore, the results are grouped R27 into the effects on behaviour, quality of life, job satisfaction, user satisfaction, how R28 the technology functions in practice, cost and cost savings. R29 R30 R31 R32 R33 R34
34 results of international studies R1 R2 table 1 International inventory of technological interventions for caregivers of people with R3 dementia R4 1. With regard to the technological requirements. R5 A: Requirements for help relating to the symptoms of dementia; R6 B: Requirements for social contact and company for the person with dementia; R7 C: Need to monitor the health and safety of the patient with dementia (by requirements 2 R8 we mean the needs of patients with dementia themselves or their caregivers as listed R9 in the study by Lauriks et al. 2007). R10 2. With regard to the results: R11 D. Patients with dementia; R12 Z. Professional caregivers; R13 M. Informal caregivers (e.g. family members). R14 R15 R16 R17 R18 R19 R20 R21 R22 R23 R24 R25 R26 R27 R28 R29 R30 R31 R32 R33 R34
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R1 R2 R3 R4 R5 R6 R7 R8 R9 esults r R10 (M) Quality of life less are caregivers 87% of the informal of their patient. about the safety worried who caregivers half of the informal Almost confidence greater have use the technology in the home. about safety Expenditure and savings �1,504,773 group, the control to Compared of the course during the entire saved was being paid attention with specific project, postponing by gained savings the cost to home to a nursing of the patient, admittance the intervention to Compared or hospital. were people times as many four group, home, hospice or to a nursing admitted hospital. (D) User satisfaction technology the accept with dementia Patients home if the in their own readily more it is in the interest them that tell technicians to rather than an aid research of scientific is The latter help them with their problems. stigmatizing. to be felt often R11 R12 R13 R14 R15 R16 R17 R18 R19
R20 quasi with dementia, N= 406 patients study. experimental with = 233 patients group Intervention technology. to the access who have dementia, with dementia, = 173 patients group Control the technology. access to who do not have and intervention group the control Matching and MMSE. age of gender, in terms group among informal circulated Questionnaires about patient about their feelings caregivers and the use of technology. safety made. savings any into analysis Cost design. post-test with dementia, N=8 patients the included through with dementia Patients have to had Patients servicelocal organization. of 12-15 and someone who an MMSE score them. after looked installation technical of the Observation who the researcher, homes by in people’s the hour after one more for remained had left. technicians tudy set-up, inclusion criteria and methods and methods inclusion criteria tudy set-up,
s ------R21 R22 R23 R24 R25 R26 R27 tudy setting and technology and tudy setting s requirements R28 home. in the patient’s Situation fall bed light, C: bed sensor, flood mat, pressure detector, clock, gas calendar detector, 3 of 2 to (an average detector used in each are sensors separate household) in which an alarm is alarm centralized a local to sent a contact which can system requires if the situation caregiver it. home. in the patient’s Situation monitor’ can C: ‘cooking gas in dangerous off the switch caregiver warn the and situations ‘Night an SMS message. through out of gets lamp’: if the patient on is switched bed, then the light automatically. R29 R30 R31 R32 R33 Great Britain Britain Great 2006 21 months and Ireland Britain, Great Lithuania 2004 in 2001, Initiated although it is unclear how lasted long the project eference in the literature, in the literature, eference
able 1 r of and length year country, the intervention Adlam, Faulkner, Orpwood, Orpwood, Adlam, Faulkner, Jones, Macijauskiene, (6) Buraitiene - - - - - Woolham (5) Woolham -
R34 t
36 R1 R2 R3 R4 R5 R6 R7 2 R8 R9 User satisfaction (M) User satisfaction with satisfied are caregivers Informal it is that the appliances and commented need be mindful of the patient’s to important privacy. for the idea against argued caregivers Informal connection with an internet a computer that this is not automatically because is necessary, worried are and they everyone, to available adapt to about the possibility of having needs. the patients’ to technology and savings Costs the that indicated caregivers Informal be cheaper than the cost must technology to a nursing admitted the patient of having home. on behaviour (D) Effects in gauge to it is difficult It seems that gets out of bed. It when a patient practice up a lot of time, is takes that is an exercise more repeated abandoned, or sometimes to continue than once. Indeed, the sensors of bed’ signals, as a ‘in bed’/’out register the interpret to of which it is difficult result behaviour. R10 R11 R12 R13 R14 R15 R16 R17 R18 R19
N= 8 informal caregivers, pre-test/post-test pre-test/post-test caregivers, N= 8 informal design. phases. out in three carried was This study phase 2: technology, of the Phase I: expectations phase the technology, and installing developing technology. of the 3: evaluation all phases. for groups Focus (including parents caregivers N= 56 informal took part in this with autism, who of children project). unknown. Method R20
- - - - - R21 R22 R23 R24 R25 R26 R27
Situation in the patient’s home. in the patient’s Situation noise in the kitchen, C: camera beside the telephone, detector and on the doors sensors beside detector water windows, which can and toilet, the bath the send out an alarm signal to an through caregiver informal email or pager. SMS message, home. in the patient’s Situation around detectors C: movement and a bed the bed, bed mat link sensor with an SMS-based An caregiver. the informal to study was made in this attempt the sleeping pattern, regulate to of the the safety, and improve by caregiver partner/informal the sleeping pattern monitoring with dementia of the patient using the above-mentioned sensors. R28 R29 R30 R31 R32 R33 2003 6 months 2006 12 months United States of America States United of America States United
Vilans (8) - Kinney, Kart, Murdoch, Murdoch, Kart, Kinney, Ziemba (7) - - - - - R34
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R1 R2 R3 R4 R5 R6 R7 R8 R9 esults r R10 (M) Quality of life positively. reacted caregivers The informal easier and made their lives The technology in which the way helped them improve to was possible their time. It organized they to and not have if necessary, run an errand a ‘babysitter’ until was in the house. wait the that indicated caregivers informal Seven worry else to something just was technology to remember to have you about (because it on). switch and savings Costs it an added consider caregivers Informal is a lot cheaper the technology bonus that to a be admitted to of having than the cost home. nursing worked the technology How possible to as it was well worked The system of wandering possible incidents two prevent wandering of 15 situations average, On off. were place dangerous to a potentially off home. Although daily in the nursing recorded opening a kitchen only involved this often example. for door, User satisfaction and their by both the patients Collaboration No good. was on the project caregivers patients how out into carried was research hands are Two a bracelet. about wearing felt to This was the bracelet. remove to required patients for the it as difficult possible make the bracelet. remove to with dementia R11 R12 R13 R14 R15 R16 R17 R18 R19
R20 pre-test/post-test caregivers, N=19 informal design. phases. out in two carried was This study the wishes of list to groups Phase 1: focus Phase 2: using the findings caregivers. informal monitoring phase 1, an online, web-based from sends an This system developed. was system a dangerous whenever the caregiver SMS to occurs. situation with caregivers informal Inclusion of different and gender, ethnic backgrounds, different with dementia. with the patient relationship (three caregivers with 16 informal Interviews the condition out because dropped caregivers were whom they with dementia of the patient deteriorated). for caring N=4 (hospital), with dementia N= 5 patients home), N= 3 (nursing with dementia patients with (home situation) with dementia patients unknown. of dementia design. Extent post-test take would they that indicated patients A few part voluntarily. with caregivers. Interviews tudy set-up, inclusion criteria and methods and methods inclusion criteria tudy set-up,
s ------R21 R22 R23 R24 R25 R26 R27 tudy setting and technology and tudy setting s requirements R28 home. in the patient’s Situation record up to set C: camera for the activities and sensors and electricity water door, the wishes of (subject to with an caregiver) informal the informal link to SMS-based caregiver. in the hospital, Situation home and care residential home. patient’s which bracelet, C: electronic if the a pager a signal to transmits after area, the safe leaves patient be made to this a decision can the patient. and localize search R29 R30 R31 R32 R33 2006 6 months Britain Great 2004 and 8 6 months 4 weeks, weeks United States of America States United eference in the literature, in the literature, eference
r of and length year country, the intervention Miskelly (10) Miskelly - - - - - R34 (9) Kart Kinney, -
38 R1 R2 R3 R4 R5 R6 R7 2 R8 R9 esults r (D) User satisfaction the mobile phone that thought The patients carry to a nuisance, bulky and awkward was with them. around functioned the technology How in 90% of the cases, well worked The system in buildings and on so well but it did not work no GPS was there because public transport not could caregiver signal and the informal was situated. the patient see where (D) User satisfaction when find it disturbing with dementia People goes on and their bed automatically by a light went sometimes In this sense, the light off. of in the process still were out when they sitting on were and off their slippers taking find People confusion. the bed. This caused react they but how useful, the technology much on the individual it depends very to patient. (Z) satisfaction Work quality work, improved with Satisfaction development, personal observed, of care to compared increased motivation internal group. of the control that of work or pressure of work The amount because group, in the intervention increased work. things at on more focus people had to Quality of life (M) Quality of life positively. reacted caregivers The informal easier and made their lives The technology in which the way helped them improve to was possible their time. It organized they to and not have if necessary, run an errand a ‘babysitter’ until was in the house. wait the that indicated caregivers informal Seven worry else to something just was technology to remember to have you about (because it on). switch and savings Costs it an added consider caregivers Informal is a lot cheaper the technology bonus that to a be admitted to of having than the cost home. nursing worked the technology How possible to as it was well worked The system of wandering possible incidents two prevent wandering of 15 situations average, On off. were place dangerous to a potentially off home. Although daily in the nursing recorded opening a kitchen only involved this often example. for door, User satisfaction and their by both the patients Collaboration No good. was on the project caregivers patients how out into carried was research hands are Two a bracelet. about wearing felt to This was the bracelet. remove to required patients for the it as difficult possible make the bracelet. remove to with dementia R10 R11 R12 R13 R14 R15 R16 R17 Satisfaction with work with Satisfaction questionnaires Questionnaire Satisfaction Life Sense of Coherence R18 • • • R19 N= 11 patients with dementia, post-test design. post-test with dementia, N= 11 patients the and recording with caregivers Interviews such as patient, activities of the daily and weekly centre, visiting the day-care the baker, to going etc. with dementia, number of patients N= unknown design. post-test caregivers. with informal Interviews quasi caregivers, N= 33 professional study. experimental n= 2 units. group Intervention n= 2 units. group Control questionnaire: Standardized N=19 informal caregivers, pre-test/post-test pre-test/post-test caregivers, N=19 informal design. phases. out in two carried was This study the wishes of list to groups Phase 1: focus Phase 2: using the findings caregivers. informal monitoring phase 1, an online, web-based from sends an This system developed. was system a dangerous whenever the caregiver SMS to occurs. situation with caregivers informal Inclusion of different and gender, ethnic backgrounds, different with dementia. with the patient relationship (three caregivers with 16 informal Interviews the condition out because dropped caregivers were whom they with dementia of the patient deteriorated). for caring N=4 (hospital), with dementia N= 5 patients home), N= 3 (nursing with dementia patients with (home situation) with dementia patients unknown. of dementia design. Extent post-test take would they that indicated patients A few part voluntarily. with caregivers. Interviews R20 tudy set-up, inclusion criteria and methods and methods inclusion criteria tudy set-up,
s ------R21 R22 R23 R24 R25 R26 R27 tudy setting and technology and tudy setting s requirements home. in the patient’s Situation with GPS in C: Mobile telephone via patients down track to order the computer. accommodation. Sheltered sensor C: bed lamp with sensors, tap and sensor to the attached which cooker, to the attached tap or off the switch able to was the that but in such a way cooker, could also with dementia patient them on again. switch 4 units home split into Residential 9-12 residents. every for in detector B and C: movement sensor on pressure the corridor, detector, fall gate, the garden the to next detector movement with an alarm bed, everything caregivers. to the transmitter by a sensor activated lights Night communication and internet and the the family between caregivers. professional Situation in the patient’s home. in the patient’s Situation record up to set C: camera for the activities and sensors and electricity water door, the wishes of (subject to with an caregiver) informal the informal link to SMS-based caregiver. in the hospital, Situation home and care residential home. patient’s which bracelet, C: electronic if the a pager a signal to transmits after area, the safe leaves patient be made to this a decision can the patient. and localize search R28 R29 R30 R31 R32 R33 Great Britain Great 2005 21 months Britain Great 2005 21 months Sweden 2005 12 months 2006 6 months Britain Great 2004 and 8 6 months 4 weeks, weeks United States of America States United eference in the literature, in the literature, eference
Orpwood, Sixsmith, Sixsmith, Orpwood, Chadd, Gibson, Torrington, (12) Chalfont - (13) Ljunggren Engstrom, - r of and length year country, the intervention (11) Miskelly ------Miskelly (10) Miskelly - - - - - Kinney, Kart (9) Kart Kinney, - R34
39 Chapter 2
R1 R2 R3 R4 R5 R6 R7 R8 R9 esults r User satisfaction (M en D) User satisfaction initially were caregivers Informal As soon about this project. apprehensive better became caregivers as the informal who were with the doctors acquainted the accepted they in the project, involved with dementia Patients readily. more system the doctor’s recognizing at better became underway. got as the project face functions the technology How out specific also carried caregivers Informal with dementia on the patients memory tests could which they to the extent measure to of their memory. and the status remember the doctor. to the results sent The caregiver also these results 89% of the cases In 76% to out carried the doctor that the tests matched technology the way, In this on the patient. are the memory tests that also ensures executed. correctly R10 (M) Quality of life that indicated caregivers Half of the informal independence and more the aids facilitated less were they that indicated than one third about the patient. worried Expenditure and savings €37 and the most aid was The cheapest €100. As a side note, one was expensive a lower said that caregivers informal acquiring the to be an obstacle can income technology. R11 R12 R13 R14 R15 R16 R17 R18 Blessed Dementia Scale Blessed Dementia Short Blessed Test State of Mini Mental version Korean Examination Rating Dementia Clinical an how (indicates Interview Burden Zarit for about caring feels caregiver informal panicking,etc.) nervous, the patient, R19 • • • • • N= 140 patients with dementia and 2,955 with dementia N= 140 patients family caregivers, informal caregivers, registered design. post-test and doctors, members home and a nursing from Inclusion: patients for day a health clinic who visited patients treatments. questionnaires: Standardized who used the with dementia N= 64 patients calendar Cost-benefit analysis of the technological aids. technological of the analysis Cost-benefit R20 who used the night with dementia N= 8 patients light gas who used the with dementia N= 2 patients detector who used the lost with dementia N= 34 patients detector item who used the with dementia N= 26 patients phone with icons who used the with dementia N= 10 patients medicine memory aid Self reports. tudy set-up, inclusion criteria and methods and methods inclusion criteria tudy set-up,
s - - - - - R21 R22 R23 R24 R25 R26 R27 tudy setting and technology and tudy setting s requirements R28 home in the patient’s Situation home. and the nursing caregivers B and C: informal caregivers and professional and look up information can with each other communicate the special, web-based through system. telecommunication were with dementia Patients using different monitored scales and function cognitive The recorded. were the scores in the the data registers caregiver the doctor and sends it to system the telecommunication through Patients on the computer. system in get also able to are themselves or caregiver with a doctor touch the telecommunication through and a video link. system home. in the patient’s Situation lamp, night A and C: calendar, off the switch (can detector gas on), left if it is accidentally gas (a simple telephone photo-phone which the photos, containing to in order can click onto patient item lost ring a specific person), a lost a button pressing finder (by emits a noise), medicine item that (a medicine box reminder someone emits a signal whenever their medicine). take needs to R29 R30 R31 R32 R33 Korea 2000 2 years Finland, Britain, Great Lithuania and Ireland, Norway 2005 in 2001; unclear Began long this project how lasted eference in the literature, in the literature, eference
r of and length year country, the intervention Duff, Dolphin (15) Duff, - - - - - R34 Lee, Kim, Lee, Kim, Jhoo, Lee, Woo(14) -
40 R1 R2 R3 R4 R5 R6 R7 2 R8 R9 User satisfaction (D) User satisfaction found the aids useful, with dementia Patients on and off the bed lamp (it went for except reason) and for no apparent and often too not possible (it was detector item the lost with the help of an audible find the item to to aid was signal). The easier a technological about it. were people positive use, the more to help with had often caregiver An informal of the out the purpose and goal working with dementia. the patient aid for and savings Costs wished caregivers the informal The price that only higher than the commercial was pay to of the phone with icons. price in the case (M) User satisfaction to make used in particular was The system and members with other family contact The online discussion caregivers. informal and the online seen as valuable was group as viewed manual was guide and resource useful. being extremely (M) User satisfaction other for searched caregivers informal New about the diagnosis) than (more information who had been caring caregivers the informal for searched (they longer someone for for in healthcare about problems information provide groups Virtual focus provision). informal different geographically access to seen as an enrichment This was caregivers. for of searching method of the traditional gatherings. such as peer-to-peer information,
R10 R11 R12 R13 R14 R15 R16 R17 R18 R19 some dropped out, post-test design. out, post-test some dropped N=34 patients with dementia, finally N=20 after finally N=20 with dementia, N=34 patients from with dementia Inclusion of patients by using and health facilities hospitals interested to encourage brochures information took who Patients part. take to to ask parties to light a diagnosis of between have part had to to the ICD-10, according dementia strong slightly an MMSE have of age, be older than 50 years health, have be in good of 12 or higher, score about the informed are caregiver, an informal the researchers to in close proximity live project, from the chance of benefiting a good and have to not allowed were who Patients technology. were disorder, psychiatric had a participate, or study, part in another research taking already within to an institution be admitted due to were months. three Interviews. out of which N= caregivers N= 76 informal observational 44 filled in the questionnaire, group. without a control research with different caregivers Inclusion of informal backgrounds. ethnic on the use of system analysis Data after system about the use of Questionnaire 6 months. content posted, were that N= 566 topics divided up according Subjects were analysis. from being given, was that of care the level to support. This complex more basic help to far on how dependent largely support is again Someone who is has progressed. the dementia only needs basic of dementia in the early stages a with compiling assistance example, help; for shopping list. R20
------R21 R22 R23 R24 R25 R26 R27
Situation in the patient’s home. in the patient’s Situation item lost A and C: calendar, detector, gas lamp, night detector, phone with icons. home. in the patient’s Situation system B: telecommunication from caregivers informal for which gave within the family, and a formal them access to could that network information and them with assistance provide information. home. in the patient’s Situation through network B: electronic from caregivers which informal find could within the family communicate and information with each other about everything to care providing to related people with dementia. R28 R29 R30 R31 R32 R33 Ireland 2005 in 2001; unclear Started long this project how lasted of America States United 2002 6 months of America States United 1998 12 months
Czaja, Ruber (17) Czaja, - (18) Mahoney - Cahill, Begley, Faulkner, Faulkner, Cahill, Begley, (16) Hagen ------R34
41 Chapter 2
R1 R2 R3 R4 R5 R6 R7 R8 R9 esults r R10 (M) Quality of life used people were was When the technology complaints, depressive by less troubled became a lot of care who provided caregivers in confidence and had greater resilient more to providing regard with expertise their own who in the group than those caregivers care to them. sent only had information on behaviour (D) Effects patients that revealed 1 it was During study role in the multimedia active a more played therapy. than with the traditional system for topics with It helped the patients and more, talked people conversation, the over control had more the caregiver role active study 2, the more In conversation. was highlighted. the patients by played R11 R12 R13 R14 R15 R16 R17 R18 Centres for Epidemiologic Studies for Centres scale Depression problems Memory and Behaviour checklist Health and behaviours Caregiver scale Social support scale Received questionnaire evaluation Project R19 • • • • •
R20 caregivers N= 23 informal group Intervention intervention. who made use of the technological who caregivers N= 23 informal group Control to them. sent only had information during who, caregivers Inclusion of informal with a person for cared have 6 months, the last older were daily, 4 hours at least for dementia in the same area lived of age, than 21 years to telephone, intended had a as the patient, 6 months the next for in the same area remain with The patients English well. and spoke to be diagnosed with Alzheimer had dementia with an MMSE or another type of dementia less than 23. was that score questionnaires: Standardized who with dementia Study 1- N=18 patients or the system the multimedia to referred were The groups reminiscence therapy. traditional level, educational of age, similar in terms were study. Observation of dementia. and stage took who with dementia Study 2- N=11 patients well as the as system part in the multimedia Observation reminiscence therapy. traditional study. with an with dementia Inclusions of patients 14 and 17. of between MMSE score average and the of the patient the behaviour Encoding caregiver tudy set-up, inclusion criteria and methods and methods inclusion criteria tudy set-up,
s ------R21 R22 R23 R24 R25 R26 R27 tudy setting and technology and tudy setting s requirements R28 home. in the patient’s Situation group B: The intervention with a a telephone received used for which was screen, the patients between contact and professional and the informal sessions and different caregivers, obtain to conducted were about providing information with dementia. a patient to care only received group The control information. Home environment. with system B: multimedia music and video clips, photos, the patient for which is easy for particularly operate, to therapy. reminiscence R29
R30 R31 R32 R33 United States of America States United 2007 6 months Britain Great 2004 of project Duration unclear eference in the literature, in the literature, eference
r of and length year country, the intervention Astell, Ellis, Alm, Dye, Ellis, Alm, Dye, Astell, (20) Campbell, Gowans - - - - - R34 (19) Finkel -
42 R1 R2 R3 R4 R5 R6 R7 2 R8 R9 esults r on behaviour (D) Effect who with dementia 25% of the patients their hands wash able to part, were took help without any once more independently the caregiver. from (D) User satisfaction and a bracelet wear to obliged were People as a nuisance. experienced this was (D) User satisfaction to be initially appeared The patients products when the different enthusiastic user problems them, yet to presented were example for with all 4 products, emerged on the CD player. switch to clicking on an icon designed in the are When similar products several be tested should always they future, researchers. times in the opinion of Quality of life (M) Quality of life used people were was When the technology complaints, depressive by less troubled became a lot of care who provided caregivers in confidence and had greater resilient more to providing regard with expertise their own who in the group than those caregivers care to them. sent only had information on behaviour (D) Effects patients that revealed 1 it was During study role in the multimedia active a more played therapy. than with the traditional system for topics with It helped the patients and more, talked people conversation, the over control had more the caregiver role active study 2, the more In conversation. was highlighted. the patients by played R10 R11 R12 R13 R14 R15 R16 R17 R18 Centres for Epidemiologic Studies for Centres scale Depression problems Memory and Behaviour checklist Health and behaviours Caregiver scale Social support scale Received questionnaire evaluation Project R19 • • • • • N= 10 patients with average to serious average with N= 10 patients set-up. in a clinical tested dementia, Observation. in a home-based with dementia N= 16 patients setting. home, in a nursing with dementia N= 10 patients design. pre-test/post-test with of dementia, stages Inclusion of different of serious dementia. the exception the patients asking how by began We with together their dementia, experienced faced. they their wishes and the problems a used as the basis for were The answers had that for 4 products compiled questionnaire been developed. with interviews in-depth Semi-structured, with dementia. patients Intervention group N= 23 informal caregivers caregivers N= 23 informal group Intervention intervention. who made use of the technological who caregivers N= 23 informal group Control to them. sent only had information during who, caregivers Inclusion of informal with a person for cared have 6 months, the last older were daily, 4 hours at least for dementia in the same area lived of age, than 21 years to telephone, intended had a as the patient, 6 months the next for in the same area remain with The patients English well. and spoke to be diagnosed with Alzheimer had dementia with an MMSE or another type of dementia less than 23. was that score questionnaires: Standardized who with dementia Study 1- N=18 patients or the system the multimedia to referred were The groups reminiscence therapy. traditional level, educational of age, similar in terms were study. Observation of dementia. and stage took who with dementia Study 2- N=11 patients well as the as system part in the multimedia Observation reminiscence therapy. traditional study. with an with dementia Inclusions of patients 14 and 17. of between MMSE score average and the of the patient the behaviour Encoding caregiver R20 tudy set-up, inclusion criteria and methods and methods inclusion criteria tudy set-up,
s ------R21 R22 R23 R24 R25 R26 R27 tudy setting and technology and tudy setting s requirements home. in the patient’s Situation with system A: a computer help used to was a bracelet wash with dementia patients what told were their hands. They see could do and the system to potential their hands so any also be corrected could mistakes put their in time (if patients machine, hands under the coffee of the tap). instead example, for at home and in a Situation home. nursing a ‘window A: a simple CD player, video showed that the World’ to the example, for of, images the where or the street garden aid a conversational were, shops to help the patient could that things with memory remember and help with different prompts activities. Situation in the patient’s home. in the patient’s Situation group B: The intervention with a a telephone received used for which was screen, the patients between contact and professional and the informal sessions and different caregivers, obtain to conducted were about providing information with dementia. a patient to care only received group The control information. Home environment. with system B: multimedia music and video clips, photos, the patient for which is easy for particularly operate, to therapy. reminiscence R28 R29
R30 R31 R32 R33 Canada 2003 unclear length Project Britain Great 2007 unclear length Project United States of America States United 2007 6 months Britain Great 2004 of project Duration unclear eference in the literature, in the literature, eference
Orpwood, Gibbs, Adlam, Gibbs, Orpwood, Meegahawatte Faulkner, (22) - r of and length year country, the intervention Mihalidis, Carmichael, (21) Fernie Boger, - - - - - Astell, Ellis, Alm, Dye, Ellis, Alm, Dye, Astell, (20) Campbell, Gowans - - - - - Finkel (19) Finkel - R34
43 Chapter 2
R1 The international studies are described below. R2 R3 study setting and study design R4 The study environment in which the various studies took place, was usually in R5 the patient’s own home. A few studies were conducted simultaneously in several R6 different healthcare settings. The length of the intervention varied. There were five R7 studies that lasted for six months or less (7, 9, 10, 17, 19). Three studies had an R8 intervention that lasted between six and twelve months (8, 13, 18). Three studies R9 had a technological intervention that lasted longer than 12 months (5, 11, 12) and R10 one study (14) had an intervention that lasted longer than 24 months. In six of the R11 research studies, the length of the intervention was unknown (6, 15, 16, 20-22). R12 R13 The technologies that were studied were divided in three sections. R14 R15 A. The need for help with the symptoms associated with dementia (for example, R16 forgetfulness, boredom, inactivity). R17 There are various types of technology applications that can be used to assist patients R18 with their day-to-day activities, enhance their quality of life, and support their intake R19 of medicine. These include an electronic calendar for scheduling daily activities R20 which caregivers can easily create themselves. A picture phone whereby the patient R21 can simply click on someone’s picture to dial their number. A computer system with R22 a sensor bracelet, which helps people with dementia when they wash their hands. R23 The system uses a pre-recorded voice to let the person know how he or she should R24 wash their hands. Through the bracelet, the system can record the position of the R25 patient’s hands so that any mistakes can be corrected. Other examples are a lost- R26 property tracking device (by pressing a button, the lost item is detected by sound), R27 or a music sound system that can be turned on and off with the press of one single R28 button. Yet another technology application offers a ‘window to the world’ by making R29 video recordings of everything that goes on outside the building such as activities in R30 the garden or the shopping centre. There is also a tool which uses a voice-recording R31 to jog a patient’s memory about issues that were discussed earlier, for example. R32 Finally, the medicine-alarm which emits a signal to remind a patient to take his or her R33 medication was also studied. R34
44 B. Dementia patients’ need for social contact and companionship R1 Telecommunication systems for informal caregivers are used to search for information R2 and to establish contact with professional caregivers or other informal caregivers. A R3 multimedia system consisting of photos, music and video clips that can be easily R4 operated by people with dementia is used for companionship. Technology geared R5 towards stimulating social contact and companionship for the person with dementia R6 is also used as an advisory resource for caregivers and can take the form of internet R7 communication between family members and the professional caregivers or between 2 R8 doctors and patients. R9 R10 C. The need to monitor the health and safety of patients with dementia. R11 There is a wide variety of technological applications that can be used to monitor R12 people with dementia, both in terms of their state of health and their personal R13 safety. These include sensors; examples of which are described in more detail in table R14 2 below, like a bed, window, noise, door, gas electricity and water sensor. R15 R16 R17 R18 R19 R20 R21 R22 R23 R24 R25 R26 R27 R28 R29 R30 R31 R32 R33 R34
45 Chapter 2
R1 table 2 Examples of sensor technology R2 sensor role alarm R3 Bed sensor Detects when the person is in - or The alarm can also go off if someone out of - bed and switches the light gets in or out of bed. For example, R4 on or off accordingly. this can be installed on the DECT telephone of the professional R5 caregivers and even on the informal R6 caregiver’s mobile phone. R7 Window sensor Detects whether a window is Can emit an alarm when the window open or closed. remains open. R8 Noise sensor Detects whether a specific noise Can emit an alarm if the noise level R9 exceeds a pre-determined level. exceeds a certain level (if someone shouts loudly, for example, or falls out R10 of bed at night). R11 Door sensor Detects whether the door is open Can emit an alarm when the door R12 or closed. remains open. R13 Gas detector A sensor that detects whether the Can emit an alarm when the gas gas is still on and in some cases is remains on, but also as soon as the R14 also able to switch the gas off. gas is switched off. R15 Electricity sensor Detects whether electricity is Can emit an alarm if the electricity is being used. used for an unusually long time, or R16 not at all. R17 Water sensor Detects the presence of water Can emit an alarm if water is R18 (the sensor can be installed detected, which can happen if the beside the bath, for example). bath or shower starts to overflow. R19 R20 In addition to sensors, some technology applications focus on detecting activity and inactivity. For example, a power sensor placed in a gas cooker can show when someone cooks less R21 frequently; if necessary, additional measures can then be taken. This is one example of the ambient intelligence technology referred to earlier. R22 R23 R24 effects on behaviour R25 Three studies examined the behaviour of a patient with dementia. In the study that R26 used a motion sensor by the bed, a bed mat and a bed sensor with an SMS function, R27 that transmitted SMS messages directly to the caregiver, the goal was to support the R28 personal safety and normalize the sleep pattern of the partner/informal caregiver R29 by monitoring the patient’s sleep rhythm (8). However, this proved difficult because R30 people with dementia tend to take a very long time to get in or out of bed. The sensors R31 continuously emit signals indicating that the patient is in or out of bed, which makes R32 it hard to interpret the patient’s behaviour. In the case of the multimedia system, the R33 R34
46 patient appeared more active and the caregiver had more control over the discussion R1 (20). When the computer system that helped patients wash their hands was used, R2 the number of cases where patients washed their hands independently increased by R3 25% (21). R4 R5 Quality of life R6 In four studies the effects of the technology on the quality of life of the caregivers R7 was examined (5, 9, 15, 19). The caregivers reacted positively towards the sensory 2 R8 technology. The technology makes life easier because caregivers did not have to be R9 continuously on the look-out for possible dangers (the sensor would emit an alarm R10 in such instances) and they could organize their time more effectively. For example, R11 they could now go on an errand to the shops at any time of the day. However, R12 some caregivers indicated that the technology also gave them an extra care- R13 related concern, because they had to remember to switch it on (9). The residents R14 also had greater freedom of movement as a result of the sensor technology. In R15 one of the studies, a videophone was used to give the caregivers a direct link with R16 the professional caregivers or other informal caregivers. Through this technology, R17 informal caregivers had fewer problems with depression and could keep up the care R18 they were providing because they had greater confidence in their own ability (19). R19 R20 Job satisfaction R21 In one of the studies with motion sensors in a nursing home the effects onthe R22 job satisfaction levels of the professional caregivers was examined in more detail. R23 Job satisfaction, the perceived quality of care, personal development and internal R24 motivation all appeared to increase in the experimental group compared tothe R25 control group. The workload and work-related stress increased in the intervention R26 group because there was a lot more to deal with during working hours (13). R27 R28 end-user satisfaction R29 End-user satisfaction was examined in ten studies. The informal caregivers were R30 satisfied with technology applications such as the sensors, the information networks R31 and the telecommunication systems. However, in the case of the sensor technology, R32 R33 R34
47 Chapter 2
R1 it was reported that the requirement to have a computer with an internet connection R2 to send data can sometimes be a problem. Informal caregivers were also concerned R3 about having to fine-tune the technology to the personal wishes of a patient with R4 dementia. The telecommunication and information systems for caregivers were R5 perceived as being very valuable as they offer a lot of advice and information about R6 issues relating to health care (7, 17, 18). R7 R8 Some studies focused on the views of the actual patients themselves, which were R9 sometimes obtained through the agency of the formal or informal caregiver. It R10 appears that patients found the GPS telephone too troublesome and bulky to take R11 around with them, similar to the electronic bracelet, which was perceived as a R12 nuisance. The light that automatically switches on when a patient gets out of bed R13 also caused a lot of confusion among patients with dementia. They are not used to R14 it and sometimes thought that someone else was in the room with them and had R15 switched the light on. In one of the studies it was revealed that the dementia patient R16 was more likely to accept the technology being installed in their own home if the R17 people installing it told them that it was part of a scientific study, rather than to help R18 them personally with their problems. When problems associated with dementia are R19 discussed this is often experienced as stigmatization by people with dementia, in R20 fact dementia patients often tend to deny, that they are experiencing any specific R21 problems (6, 10-12, 16, 21, 22). R22 R23 Functionality of the technology R24 In three studies, the way in which the technology functioned was examined. The R25 studies focused on technologies that were designed to detect when patients wandered R26 off and consisted of a mobile phone with GPS, an electronic bracelet that transmits R27 a signal to a pager if the patient strays out of a safe area, and a telecommunication R28 system. The GPS technology worked well. Various incidents in which patients might R29 have wandered off were prevented. The mobile phone did not function very well in R30 buildings and on public transport (10, 11). Caregivers also carried out some memory R31 tests on their dementia patients to measure how much they recalled and the status R32 of their memory. They forwarded the results to the doctor. These results matched R33 R34
48 the findings of the doctor’s own tests on the patients in 76% to 89% of the cases. R1 The technology also ensured that the memory tests were carried out correctly (14). R2 R3 costs and savings R4 In four studies, an inventory of all the procurement costs related to the technology R5 was made, including all the cost savings. The voluntary caregivers were of the R6 opinion that the cost of procuring the technology ought not to be too high, R7 and in fact should be cheaper than the cost of admitting a patient to a nursing 2 R8 home. Often, admitting a patient to a nursing home was a cheaper option than R9 providing home-based care, which usually involved frequent and costly visits to R10 the patient’s home (7). The initial cost of procuring the technology must notbe R11 too high for those on lower incomes (15, 16). One study carried out over a period R12 of 21 months showed a saving of 1.5 million pounds compared to the control R13 group, because admission to a nursing home, hospice or hospital could be delayed R14 and the patients could continue living independently in their own homes (5). R15 R16 results of national studies in the netherlands R17 R18 table 3 National inventory of technological interventions for caregivers of people with R19 dementia R20 1. With regard to technology requirements. R21 A: Requirements for help relating to the symptoms of dementia; R22 B: Requirements for social contact and company for the person with dementia; R23 C: Need to monitor the health and safety of the patient with dementia (by requirements R24 we mean the needs of patients with dementia themselves or their caregivers as R25 described in the study by Lauriks et al. 2007) R26 2. With regard to results: R27 D. Patients with dementia; R28 Z. Professional caregivers; R29 M. Informal caregivers (e.g. family members) R30 R31 R32 R33 R34
49 Chapter 2
R1 R2 R3 R4 R5 R6 R7 esults Quality of life (D) Quality of life ‘social in the areas Quality of life something have ‘to isolation’, differed do’ and ‘aesthetic’ to group. control the from significantly ‘quality rates group Experimental higher than the significantly of life’ group. control on behaviour (D) Effects in the bathroom of falling Incidents less frequently. occurred and toilet (Z) satisfaction Work of domotics on effect No significant pressure work and satisfaction work nor neither positive found, was effects. negative functions the technology How The problems. A lot of technological time be explained had to system of frequent because and time again care-giving among the changes staff personnel. Expenditure and savings €708,600 on technology: Expenditure on service contract: Expenditure €28,700 annually. of € 64,000 annually A saving during the on care expected was The not realized. but was night, during the of personnel deployment the same. remained night R8 r
R9 - R10 R11 R12 R13 R14 R15 R16 DoQL Qualidem (observation) of Need for Assessment Camberwell the Elderly (within Netherlands) for healthcare scale satisfaction Work the Netherlands) (Maastricht, the Nether (Utrecht, Burn-out scale lands) R17 • • • • • N=24 patients with dementia without domotics with dementia N=24 patients and N=30 of 10 on average with an MMSE score with domotics an with dementia patients caregivers, 25 N= average, on 12 of score MMSE trial clinical randomized study, experimental design. based on MMSE, demographic Inclusion criteria (such as illness or family life-events data, of The attitude passing away). members examined. was dementia towards caregivers figures. key with five Interviews
R18 questionnaires: Standardized tudy set-up, inclusion criteria and methods inclusion criteria tudy set-up, Qualitative data analyzed by means of Nvivo by means of Nvivo analyzed data Qualitative qualitative analyse to programme (computer data).
s - - - R19 R20 R21 R22 R23 R24 R25 R26 tudy setting and technology and tudy setting requirements home with 72 Small residential units. in 12 residential inhabitants indicate to C: use of living circles were people with dementia where with control be, light to allowed and automatic lighting adequate caregivers for lighting, support about the notifications through falling, sending a up, getting patient the room, help, leaving for request a toilet the room, to not returning visit, inactivity and the whereabouts of the patient. R27 s R28 R29 R30 R31 R32 R33 Leo Polak house Leo Polak Amsterdam and Residential Osiragroup Netherlands Care 2008 4 months eference in the literature, in the literature, eference
able 3 Nouws, Sanders, Heuvelink Heuvelink Sanders, Nouws, (2, 23) - r of the and length year country, intervention - - - -
R34 t
50 R1 R2 R3 R4 R5 R6 R7 esults Quality of life (D) Quality of life ‘social in the areas Quality of life something have ‘to isolation’, differed do’ and ‘aesthetic’ to group. control the from significantly ‘quality rates group Experimental higher than the significantly of life’ group. control on behaviour (D) Effects in the bathroom of falling Incidents less frequently. occurred and toilet (Z) satisfaction Work of domotics on effect No significant pressure work and satisfaction work nor neither positive found, was effects. negative functions the technology How The problems. A lot of technological time be explained had to system of frequent because and time again care-giving among the changes staff personnel. Expenditure and savings €708,600 on technology: Expenditure on service contract: Expenditure €28,700 annually. of € 64,000 annually A saving during the on care expected was The not realized. but was night, during the of personnel deployment the same. remained night (Z) User satisfaction of the settings on personal Positive for different domotics modules rather would Personnel patients. with domotics than without work them. (D) Quality of life freedom more have Inhabitants with domotics, both of movement night. as at as well during the day functions the technology How the to improve possible It is still spend had to Technicians technology. fixing defects. a week 16 hours 12 to Expenditure and savings on technology: Expenditure €180,000. staff for expenditure High personnel a receive who had to care providing the about how explanation second functioned. technology functions the technology How and limited problems start-up Many for finance. possibilities r 2 R8
- R9 R10 R11 R12 R13 R14 R15 R16 DoQL Qualidem (observation) of Need for Assessment Camberwell the Elderly (within Netherlands) for healthcare scale satisfaction Work the Netherlands) (Maastricht, the Nether (Utrecht, Burn-out scale lands) R17 • • • • • N=24 patients with dementia without domotics with dementia N=24 patients and N=30 of 10 on average with an MMSE score with domotics an with dementia patients caregivers, 25 N= average, on 12 of score MMSE trial clinical randomized study, experimental design. based on MMSE, demographic Inclusion criteria (such as illness or family life-events data, of The attitude passing away). members examined. was dementia towards caregivers figures. key with five Interviews young at a dementia N=8 people who acquired N=8 mentally patients, N= 8 Korsakov age, N=8 people with dementia, handicapped problems, psychiatric stabilized with patients design. post-test all of the non-existent; were Inclusion criteria took part in the inhabitants above-mentioned pilot project. with caregivers. Interviews with dementia. N= 6 patients known. No further inclusion criteria were and employees leaders Project experiences. about their questioned
Standardized questionnaires: Standardized R18 tudy set-up, inclusion criteria and methods inclusion criteria tudy set-up, Qualitative data analyzed by means of Nvivo by means of Nvivo analyzed data Qualitative qualitative analyse to programme (computer data).
s ------R19 R20 R21 R22 R23 R24 R25 R26 tudy setting and technology and tudy setting requirements home with 72 Small residential units. in 12 residential inhabitants indicate to C: use of living circles were people with dementia where with control be, light to allowed and automatic lighting adequate caregivers for lighting, support about the notifications through falling, sending a up, getting patient the room, help, leaving for request a toilet the room, to not returning visit, inactivity and the whereabouts of the patient. home with 36 Small residential units. in 4 residential inhabitants with automatic control C: light lighting, inactivity measurement, monitoring, alarm, acoustic active for possibility notification, bed mat push button connection, camera speak/listening open a door, to four push panel with connection, of the to open the doors buttons units. When a small residential the arose, situation dangerous via an alarm. alerted was caregiver home with 6 Small residential unit. in 1 residential inhabitants lighting, night C: automatic lighting, electronically orientation and blinds, movement operable emergency active sound detectors, room and bedroom, in sitting call mobile switch, on/off kitchen and caregivers for communication When and intranet. other staff the arose, situation a dangerous via an alarm. alerted was caregiver s R27 R28 R29 R30 R31 R32 R33 Leo Polak house Leo Polak Amsterdam and Residential Osiragroup Netherlands Care 2008 4 months Molenkwartier Maassluis Group Care Argos 2006 in 2004 Started Amethist Bennekom Opella 2007 in 2007/2008 Started eference in the literature, in the literature, eference able 3 Homans, de Jong (24) - Nouws, Sanders, Heuvelink Heuvelink Sanders, Nouws, (2, 23) - r of the and length year country, intervention - - - - (2) Heuvelink Sanders, Nouws, ------
t R34
51 Chapter 2
R1 R2 R3 R4 R5 R6 R7 esults r R8 on behaviour (D) Effects down of falling incidents Fewer to the aid of thanks among patients the eHealth technologies. (D) Quality of life was not of patients The privacy the use of cameras. by threatened (Z) satisfaction Work did not care who provided Personnel during anymore do rounds to have a save to which is expected the night, time (not measured). lot of walking functions the technology How should not be moved Furniture of location of the fixed because but this frequently the sensors, in the beginning due to occurred were cameras The the cleaning staff. and very sensitively initially adjusted their used to get had to employees Assistants. Digital Personal Expenditure and savings €25,000. costs Purchase R9 R10 R11 R12 R13 R14 R15 R16 R17
R18 with dementia. patients N= 21 known. No inclusion criteria were and employees leaders Project experiences about their questioned tudy set-up, inclusion criteria and methods inclusion criteria tudy set-up,
s - - - R19 R20 R21 R22 R23 R24 R25 R26 tudy setting and technology and tudy setting requirements with 21 inhabitants Small residence units. in 3 residential and sound with image C: cameras for microphones interpretation, motion monitoring, infra-red acoustic sensors. temperature detectors, arose situation When a dangerous an alarm via sent was the caregiver Digital on his Personal a message (PDA). Assistant R27 s R28 R29 R30 R31 R32 R33 Lückerheide Kerkrade Zuid Limburg Meandergroup with Vilans in collaboration 2008 in 2006 Started eference in the literature, in the literature, eference
Vilans (25) - R34 r of the and length year country, intervention - - - -
52 R1 R2 R3 R4 R5 R6 R7 Quality of life (M en D) Quality of life yet. started has not Evaluation to live to be able expect Patients home independently. at longer enhance the to helps The system members Family of security. feeling decrease to their concerns expected of the project. the start at Expenditure and savings Unknown. since expensive is relatively Project in the home of is provided care to 9 times daily. 8 patient User satisfaction (M) User satisfaction caregivers of informal The reactions were the use of technologies to was thought technology The positive. use. to be easy to functions the technology How sessions 371 monitoring In total, informal Two conducted. were made use of this twice a caregivers The often. or more on average, week used it once a week other caregivers In 5 of the 371 monitoring most. at the to sent sessions someone was the monitoring to house in response flexibility should be more There data. is concerned; as monitoring as far week took place on it only often only and was not weekends, days, the because hours two for available over not take could operator central longer. for the care 2 R8 R9 R10 R11 R12 R13 R14 R15 R16 R17 N= 5 patients with mild dementia with with mild dementia N= 5 patients caregivers. informal known. No inclusion criteria about questioned were caregivers Informal their experiences. Intervention = 20 living at home with a UAS at home with a = 20 living Intervention home, of which a nursing from and care system and 10 people had had dementia 10 patients usually with a complaints, health somatic to a nursing for admittance recommendation home. of which with dementia, = 20 patients Control system home without a UAS at a number lived home and a a nursing from and with care home without in a nursing number resided UAS. living alone or with an informal Patients home. at care all received They caregiver. and informal with patients Interviews Evaluation of the project. the start at caregivers pending. R18
------R19 R20 R21 R22 R23 R24 R25 R26
Situation in the patient’s home in the patient’s Situation smoke C: bed and chair sensor, lock and electronic detector, phone, sound sensor, emergency and cameras fixed door sensor, motion sensor. the for allow aimed to The system caregiver of the informal absence days, on working hours two for over took operator while the central the for of caring the responsibility patient. home. in the patient’s Situation alarms, personal system: C: UAS prevention, fire mobility, monitoring of and detection prevention video wandering, video observation, motion sensors, infra-red telephone, on contacts magnetic bed mat, alarms, observation smoke doors, on which telephones two cameras, caregivers. be seen by could pictures R27 R28 R29 R30 R31 R32 R33 Noord Limburg care group in group care Limburg Noord with Vilans collaboration 2006 en 2007 6 months in 2006 for Started in Baarn en Soest Zorgpalet with Vilans and collaboration TNO 2008 2 years in 2006 for Started
Vlaskamp, de Vlieger, Willems de Vlieger, Vlaskamp, (26) - - - - - Van der Leeuw (27) Van - R34
53 Chapter 2
R1 R2 R3 R4 R5
R6 R7 esults How the technology functions the technology How place, but taken has No evaluation on the elderly in an earlier study clear with the same technology in the observed were differences of activities, also with pattern couples. Expenditure and savings Home Unit: €500, to Expenditure €3,000 to €500 (from functions which connected. per house) are r R8 of start the recent due to Unknown will but an evaluation the project, place. take Expenditure and savings €1,800. Expenditure: R9 R10 R11 R12 R13 R14 R15 R16 R17 N = 24 individuals,N = 24 some with dementia. known. No inclusion criteria unknown. Method R18 with dementia. N= 12 patients known. No inclusion criteria study. in a previous of graphs Analyses place. taken yet has No evaluation tudy set-up, inclusion criteria and methods inclusion criteria tudy set-up,
s ------R19 R20 R21 R22 R23 R24 R25 R26 tudy setting and technology and tudy setting requirements home. in the patient’s Situation of sensors), C: Home Unit (packet pressure motion detectors, infra-red use sensors. and electronic sensors the at the data analyzes A computer and provides of the project start the represent These data graphs. of a patient. living pattern standard can be it this pattern Through unusual any whether established daily in the place taken have changes if less for instance of the patient, life is done. cooking home. in the patient’s Situation functioning: C: with an automatic which motion sensors, 5 infra-red up, the getting the patient register sleeping habits, use of medication, and the in-house use of bathrooms temperature. occur the informal When changes telephone by is contacted caregiver is initiated. or a house call R27 s R28 R29 R30 R31 R32 R33 GGZ Groningen and GGZ Groningen the elderly for care intramural with Vilans in collaboration 2006 and 2008 6 months in 2008 for Started and Homecare Proteion Northern and Middle in the Netherlands Limburg, with Vilans collaboration 2008 6 months in 2008 for Started eference in the literature, in the literature, eference
- Willems, van der Leeuw (29) Willems, van - Van der Leeuw, Willems, der Leeuw, Van 28) Golsteijn-Kramer(1, - R34 r of the and length year country, intervention - - -
54 The national studies only examined those technologies that were associated with R1 monitoring the health and safety of patients. R2 R3 study setting and study design R4 Four studies were conducted within the setting of a small-scale residential nursing R5 home as can be seen in table 3 (2, 23-25). Four other studies were carried out in the R6 homes of the patients with dementia (1, 26-29). R7 2 R8 The duration of the intervention varied from less than six months to two years (2, R9 24, 28). R10 R11 effects on behaviour R12 The three studies in which sensor technology was examined reported the most R13 radical behavioural changes: a drop in the number of patients falling down in the R14 bathroom and the toilet (23), calmer behaviour and improved eating habits (24), and R15 fewer falls (25). R16 R17 Quality of life R18 The quality of life was examined in four studies. In one study, which took place in R19 the setting of a small-scale residential nursing home, the quality of life improved R20 significantly, as was subsequently tested with the help of the Dementia Quality of R21 Life scale (DQoL) in the areas of ‘social isolation’, ‘something to keep them occupied’, R22 and ‘aesthetics’, compared to the control group. Patients in the experimental group R23 also rated their quality of life much higher than patients in the control group (23). R24 In another small-scale residential nursing home setting, the technology gave the R25 residents greater freedom of movement during both the day and the night. Doors R26 were no longer locked and each patient was assigned a certain area that was R27 considered safe for them. As soon as the patient stepped out of this area, an alarm R28 signal was sent to the caregivers (2). The third study, which took place in a small- R29 scale, residential nursing home setting, revealed that the personal privacy ofthe R30 patients was not compromised by the cameras that had been installed. The patients R31 themselves were not troubled by them, and nor were their families (28). A study R32 R33 R34
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R1 of 28 patients who still lived at home revealed some initial findings in terms of the R2 quality of life of both the informal caregivers and people suffering from dementia. R3 A more extensive evaluation has yet to be carried out. However, it did appear that R4 patients expected to be able to live independently in their own homes for longer and R5 that the system helps to increase their sense of personal safety. At the beginning of R6 the project, family members indicated that they had fewer worries (27). R7 R8 Job satisfaction R9 Job satisfaction among caregivers was examined in two studies. In one study, no R10 significant impact was indicated as a result of the domotica on the workload of the R11 caregiver; no negative effect, but no positive effect either (23). In another study it R12 was revealed that nightly rounds no longer had to be carried out by the caregivers R13 any more, which was viewed as a positive outcome (28). R14 R15 end-user satisfaction R16 User-satisfaction among healthcare staff in the nursing home and informal caregivers R17 was examined in two studies. The caregivers indicated that they were satisfied with R18 the way in which the home automation modules had been personalized for the R19 different patients. They also preferred to work with the domotica technology that R20 had been installed in the residential care home, rather than without it, because it R21 was viewed as a support in the health sector and was very easy to work with (2). R22 The study that focused on home-based informal caregivers revealed that they were R23 very positive about the use of certain tools such as the video monitor, bed and chair R24 sensors, smoke detectors, electronic lock, health telephone line, sound sensors, door R25 sensors, permanent camera installations, and movement sensors (26). No problems R26 were encountered with the use of the technology; they found the technology easy R27 to apply in practice. R28 R29 Functionality of the technology R30 All of the studies examined how the technology functioned. The most striking results R31 are that the systems are often very expensive and that at the start of the project in R32 particular a lot of different technical problems occur, such as the technology not R33 R34
56 being adequately fine-tuned to the needs of an individual patient. During the course R1 of the project, the technology often works much better because various adjustments R2 have been carried out. It also appeared that different improvements were possible R3 after the start of a project, such as a better picture on a DECT telephone (a telephone R4 frequently used in nursing homes in order to make a call and to see an alarm R5 displayed on the screen of the telephone) or mobile sensors so that furniture can R6 also be moved around in patients’ rooms (1, 2, 23-26, 28, 29). R7 2 R8 costs and savings R9 In three studies the costs and savings of the project were investigated (2, 23, 27). R10 The procurement costs were high. In one study, it was hoped that an annual amount R11 of €64,000 could be saved on the cost of providing night care, however this was R12 not achieved and the number of night-time staff employed remained the same (23). R13 Another study indicated high staff costs as a result of repeatedly having to explain R14 how the technology worked to new staff members. On top of this, the technical staff R15 had to work for 12 to 16 hours each week to solve specific bottlenecks, which also R16 incurs a lot of costs (2). In another study, the dementia patients who took part in R17 the project had already been earmarked for a place in a residential nursing home, R18 although it was possible to continue living at home with the help of technology, R19 nevertheless this meant that the professional caregivers sometimes had to come R20 along between eight or nine times a day, which was a lot more expensive than being R21 admitted to the residential nursing home (27). R22 R23 discussion R24 R25 technology R26 The international literature review searched for three categories of technology using R27 the classification drawn up by Lauriks (4). They include the following: R28 A. The need for help to cope with the symptoms of dementia R29 B. The need for social contact and companionship R30 C. The need for monitoring health and personal safety. R31 R32 R33 R34
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R1 In the national studies only the last category was examined: “The need for R2 monitoring health and personal safety”. In the Netherlands, this type of project is R3 the most advanced, while projects that focus on “The need for help to cope with R4 the symptoms of dementia” and “The need for social contact and companionship” R5 are hardly ever applied in the Netherlands, or not applied at all. In the Netherlands R6 the focus tends to be more on preventing dangerous situations from materializing, R7 rather than improving social contact and a sense of well-being. R8 R9 This literature review revealed that the technologies frequently used to help with R10 ‘The need for help to cope with the symptoms of dementia’ focus in particular R11 on supporting day-to-day activities, improving the quality of life and supporting R12 the intake of medication. ‘The need for social contact and companionship” often R13 concerns the contact between the patient, their family, and the caregivers through R14 telecommunication or information networks. Multimedia systems for patients that R15 enable one to view photos, listen to music, etc. also play a role here. Finally there R16 is ‘The need for monitoring health and personal safety’, which came up in both the R17 national and the international studies. In all of the studies it was all about technology R18 that could be used to safeguard patients and raise an alarm to alert a professional R19 caregiver in a nursing home/informal caregiver whenever a dangerous situation R20 arose. In some cases it was also possible to get in touch with the patient during R21 the period in which the alarm went off (for example through a speaking/listening R22 functionality on the personal alarm). R23 R24 methodology R25 The majority of the studies focused on qualitative data, not quantitative data and R26 the number of patients that took part is relatively small; an average of 12per R27 study (with the exception of 140 and 406 patients in two studies, respectively, R28 who are not included in this average). Studies on the behavioural impact factors R29 of technology applications among patients with dementia are rare. Inthe R30 Netherlands there is currently no overview of technology applications that are R31 being used for people with dementia, nor the effect that these technologies R32 could have on them, the professional caregivers who care for them, or their R33 R34
58 informal caregivers. This article attempts to provide this overview, with the aim R1 of advocating the deployment of technology to help people with dementia. R2 R3 effects R4 The first results from using technology for people with dementia seem promising, R5 although there appear to be different problems during the start-up stage. Afew R6 studies show significant improvements with regard to the effects on patient behaviour R7 (patients are less likely to fall down) and the quality of life for both the informal 2 R8 caregivers as well as the patients with dementia. For the informal caregivers, the R9 technology made life easier, ensured that time was saved, stimulated independence R10 and fewer feelings of depression. In addition to this, the user-friendliness of the R11 different technologies is also good; they appear easy to use in practice. Very little R12 research has been carried out in the area of job satisfaction. The national studies R13 show no effects. An international study in this literature review shows definite R14 improvements in job satisfaction for professional caregivers in residential nursing R15 homes who work with supportive technology. The procurement cost of the R16 technologies is usually quite high. The preliminary positive results of this literature R17 review correspond with the results of the review of Lauriks et al. (4). R18 R19 critical assessment R20 Systematic scientific research into the application of technology for people with R21 dementia has been limited, both nationally and internationally. Studies are being R22 carried out, but these are not always evaluated in a scientifically responsible manner, R23 nor are they systematic. Moreover, the studies often fail to show the extent to which the R24 characteristics for a possible control group differ from with those of the experimental R25 group. At the moment there is only one study in the Netherlands that was carried out R26 and evaluated with the aid of scientific theories and research. This was carried out R27 in a small-scale residential nursing home; scientific studies in the home situation are R28 lacking. In addition, national studies usually focus on how the technology works and R29 do not include the target group in the development of the technology. Many studies R30 fail to determine the phase of dementia from the participating patient. Research R31 into the job satisfaction levels of the caregivers is also absent. In addition, it remains R32 R33 R34
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R1 unclear whether the technology can ensure the postponement of admittance to a R2 nursing home or reduce the number of the patients’ visits to the doctor. The latter R3 in particular should be the subject of further research. Fewer visits to the doctor R4 and the ability to stay at home longer, for instance, will further stimulate the use of R5 technology. R6 R7 In short, many so-called half-baked products are now being marketed which have R8 either not been researched at all, or only superficially researched. To some extent R9 this is inevitable with the constant introduction of new technologies. However, it R10 is questionable whether implementing a partially-developed technology for people R11 with dementia is entirely without risk. Is this ethically sound? For the effectiveness R12 of the technology it is important that professional and informal caregivers together R13 with the patients themselves are involved with its design from the outset. R14 R15 One could also wonder whether the lack of effectual studies is solely linked to the R16 technology. There are plenty of technologies on the market that could be applied, but R17 it is questionable whether or not the effectiveness of these have been systematically R18 and reliably investigated. It is difficult to test the experiences and findings with people R19 with dementia. On top of that, qualitative and experimental research is needed to R20 measure the effect of technology on the patients’ behaviour and well-being. Are the R21 methods needed to research this in more detail missing? Or is the technology still R22 too sparsely applied in practice? Are ethical questions hampering the application of R23 these technologies? All of this should be researched in more detail. R24 R25 recommendations R26 This literature review reveals that not all of the different types of technology can R27 be applied arbitrarily to people with dementia. People with dementia represent a R28 very specific target group and this should be taken into account, when technology R29 is being selected. From the initial development onwards and during the later stage R30 of implementation, the technology has to be continuously readjusted until it meets R31 the needs of patients and of the informal caregivers and professional caregivers. R32 Additional research into the effects of home-based healthcare technology for people R33 R34
60 with dementia is required. What are the effects of these technologies for the patient R1 and the informal caregiver? What do these people actually need in practice? Which R2 methods are feasible to study the impressions and experiences of people with R3 dementia? This entails a lot more work than the standard market research that R4 usually takes place following the introduction of a new technology. In the following R5 chapters we focus on the evaluation of monitoring and signalling technologies as R6 described in the introduction. R7 2 R8 R9 R10 R11 R12 R13 R14 R15 R16 R17 R18 R19 R20 R21 R22 R23 R24 R25 R26 R27 R28 R29 R30 R31 R32 R33 R34
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R1 references R2 R3 1. van der Leeuw JJ. Domotica voor thuiswonende mensen met dementie. Stand van zaken. Utrecht: Vilans,2008. R4 2. Nouws H, Sanders L, Heuvelink J. Domotica voor dementerenden. De eerste ervaringen R5 in het Leo Polakhuis te Amsterdam en het Molenkwartier te Maassluis. Amersfoort: De Vijfde Dimensie, 2006. R6 3. van der Leeuw JJ. Ambient intelligent- technologie in de (woon) zorg. Utrecht: Vilans,2007. R7 4. Lauriks S, Reinersmann A, van der Roest HG, Meiland FJ, Davies RJ, Moelaert F, R8 Mulvenna MD, Nugent CD, Dröes RM. Review of ICT based services for identified unmet needs in people with dementia. Aging Research Reviews. 2007;6(3):223-46. R9 5. Woolham J. Safe at Home. The effectiveness of assistive technology in supporting the R10 independence of people with dementia. London: Hawker publications; 2006. 6. Adlam T, Faulkner R, Orpwood R, Jones K, Macijauskiene J, Buraitiene A. The Installation R11 and Support of internationally distributed equipment for people with dementia. IEEE R12 Transactions on Information Technology in Biomedicine. 2004;8(3):253-7. 7. Kinney JM, Kart CS, Murdoch LD, Ziemba TF. Challenges in caregiving and creative R13 solutions: using technology to facilitate caring for a relative with dementia. Ageing International. 2003;28(3):295-314. R14 8. Vilans. Verenigde Staten: Univerisiteit van Florida, Alzheimerwatcher. Utrecht, 2006 R15 [cited 2008 June 5]; Available from: http://www.domoticawonenzorg.nl/smartsite. dws?id=103539. R16 9. Kinney JM, Kart CS. Not quite a panacea: Technology to facilitate family caregiving for R17 elders with dementia. Technology Innovations and Aging. 2006;30(2):64-6. 10. Miskelly F. A novel system of electronic tagging in patients with dementia and R18 wandering. Age and ageing. 2004;33(3):304-6. R19 11. Miskelly F. Electronic tracking of patients with dementia and wandering using mobile phone technology. Age and ageing. 2005;34(5):497- 518. R20 12. Orpwood R, Sixsmith A, Torrington J, Chadd J, Gibson G, Chalfont G. Designing R21 technology to support quality of life of people with dementia. Technology and Disability. 2007;19(2-3):103-12. R22 13. Engstrom M, Ljunggren B, Lindqvist R, Carlsson M. Staff perceptions of job satisfaction and life situation before and 6 and 12 months after increased information technology R23 support in dementia care. Journal of Telemedicine and Telecare. 2005;11(6):304-9. R24 14. Lee JH, Kim JH, Jhoo JH, Lee KU, Kim KW, Lee DY, Woo JI. A telemedicine system as a care modality for dementia patients in Korea. Alzheimer Disease & Associated R25 Disorders. 2000;14(2):94-101. R26 15. Duff P, Dolphin C. Cost-benefit analysis of assisitive technology to support independence for people with dementia - Part 2: Results from employing the ENABLE cost- benefit R27 model in practice. Technology and Disability. 2007;19(2-3):79-90. R28 16. Cahill S, Begley E, Faulkner JP, Hagen I. Findings from Ireland on the use and usefulness of assistive technology for people with dementia. Technology and Disability 2007;19(2- R29 3):133-42. R30 17. Czaja SJ, Ruber MP. Telecommunications technology as an aid to family caregivers of persons with dementia. Psychosomatic Medicine. 2002;64(3):469-76. R31 18. Mahoney DF. A content analysis of an Alzheimer family caregivers’ virtual focus group. American Journal of Alzheimer’s Disease. 1998;13(6):309-16. R32 R33 R34
62 19. Finkel S, Czaja SJ, Schulz R, Martinovich Z, Harris C, Pezzuto D. E-Care: A Telecommunications technology intervention for family caregivers of dementia R1 patients. American Journal Geriatry Psychiatry. 2007;15(5):443- 8. R2 20. Astell AJ, Ellis M, Alm N, Dye J, Campbell J, Gowans G. Facilitating communication in dementia with multimedia technology. Brain and Language. 2004;91(1):80-1. R3 21. Mihalidis A, Carmichael B, Boger J, Fernie G, editors. An intelligent environment to R4 support aging-in-place, safety, and independence of older adults with dementia. Ubi Health symposium: The 2nd International workshop on Ubiquitous Computing for R5 Pervasive Healthcare Applications; 2003. R6 22. Orpwood R, Gibbs C, Adlam T, Faulkner R, Meegahawatte D. The design of smart homes for people with dementia- user interface aspects. Universal Access in the information R7 society. 2005;4(2):156-64. 23. Lauriks S, Osté JP, Hertogh CMPM, Dröes RM. Effectenonderzoek naar de toepassing van 2 R8 domotica in kleinschalige groepswoningen voor mensen met dementie. Amsterdam: R9 GGD, 2008. 24. Homans H, de Jong R. Opella, ondersteuning op maat. Wageningen: Opella; 2007 [cited R10 2008 June 6]; Available from: http://www.imtech.eu/eCache/DEF/5/538.bGFuZz1lbg. R11 pdf. 25. Vilans. Groepswoningen/ verpleeghuis Lückerheide. Kerkrade2008 [cited 2008 June R12 6]; Available from: http://www.domoticawonenzorg.nl R13 26. Vlaskamp F, de Vlieger S, Willems C. Pilot Monitoring gedrag. Advies aan Zorggroep Noord Limburg. Hoensbroek: iRv, 2006. R14 27. van der Leeuw JJ. Pilot met unattended autonomous surveillance (UAS) van TNO. Utrecht: Vilans, 2008. R15 28. Willems C, Golsteijn-Kramer D. Lifestylemonitoring. Mogelijkheden voor innovaties in R16 de zorg. Hoensbroek: iRv,2006. 29. Willems C, van der Leeuw J, editors. De praktijk: domotica voor thuiswonende mensen R17 met dementie. Evaluatie Leo Polakhuis; 2008; Ede. R18 R19 R20 R21 R22 R23 R24 R25 R26 R27 R28 R29 R30 R31 R32 R33 R34
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chapter 3
monitoring technology at home:
an evaluation of preventive sensor technology for dementia care
Chapter 3 is based on: Nijhof N, van Gemert-Pijnen JEWC, Woolrych R, Sixsmith A. An evaluation of preventive sensor technology for dementia. Journal of Telemedicine and Telecare. 2013. doi: 10.1258/jtt.2012.120605 Chapter 3
R1 abstract R2 R3 The ADLife preventive technology system is a commercially-available monitoring R4 technology, designed as an early warning system for older people with dementia R5 living at home to detect problems before they require crisis intervention. This paper R6 presents the results of an evaluation of ADLife over 9 months with 14 clients in two R7 healthcare organisations in the Netherlands. A mixed-method approach was used, R8 involving interviews with formal and informal caregivers, researcher observations R9 during project group meetings, analysis of nurse diaries and a cost analysis. Clients R10 and informal caregivers reported enhanced feelings of safety and security as a result R11 of having ADLife installed within the home. The system also reduced the burden of R12 care upon the informal caregiver and provided the potential for supporting older R13 people to live at home for longer. The cost analysis showed savings for clients staying R14 at home with ADLife compared with the costs of staying in a nursing home. For R15 10 clients living at home two months longer as compared to clients residing in a R16 nursing home, the savings were €23,665, while projected savings for 50 clients were R17 €124,122. A process evaluation highlighted a number of key recommendations for R18 the future design and implementation of the ADLife technology: improving operation R19 and design issues related to the storage and presentation of the system data; better R20 organisational support and education for the formal caregiver; removal of barriers to R21 the widespread adoption of the technology in care delivery. R22 R23 R24 R25 R26 R27 R28 R29 R30 R31 R32 R33 R34
66 introduction R1 R2 In 2010 an estimated 35.6 million people worldwide were living with dementia, with R3 projections suggesting that this figure will rise to 115.4 million by 2050 (1). The global R4 costs of providing care and support for those living with dementia in 2010 was 604 R5 billion dollars with informal care (unpaid care provided by families and others) and R6 the direct costs of social care (community care and residential home) contributing a R7 similar proportion of these overall costs (42%), contrasting with direct medical care R8 costs which account for only 16% of total costs (1). There is widespread recognition R9 that innovative approaches are required to meet the demands that will be placed upon R10 formal and informal care systems in the future (2) and to promote the independence 3 R11 and well-being of an ageing population. The emergence of assistive technologies is R12 one such area of development, yet relatively little is known about their effectiveness R13 (3). This is particularly evident with technologies for people with dementia who R14 often have varied and complex needs that require flexible and responsive supports R15 (4). This paper presents the results of an evaluation of the commercially- available R16 ADLife preventive technology system, designed as an early warning system to detect R17 problems before they require crisis or emergency intervention, such as admission to R18 hospital or institutional care. R19 R20 The ADLife system is installed in the home of the older person and compromises a R21 gateway with an alarm button, three door sensors, electronic usage sensor, bed mat R22 sensor, chair mat sensor and a movement sensor, which registers the pattern of a R23 person’s behaviour within the home. The gateway sends this information to a server R24 through an analogue telephone line which can be accessed remotely by a formal R25 caregiver who is able to use the readings to assess the condition of the older person and R26 as a support for clinical decision-making. The formal caregiver from the participating R27 healthcare organization contacts the person with dementia or an informal caregiver R28 (such as a friend or family member) if changes in activity occur which might indicate R29 a problem (5). To our knowledge, this is the first scientific published study evaluating R30 the ADLife system. A case study evaluating the ADLife system has been conducted R31 in the Netherlands, but has not been scientifically published (6). The key findings R32 R33 R34
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R1 were that ADLife had the potential to generate valuable information that could be of R2 benefit when supporting those with dementia, but that the interface for healthcare R3 professionals to interpret the data needs to be more user-friendly, if it is to become R4 an acceptable part of the working practices of formal caregivers. R5 R6 Delivering support for those living with dementia brings about specific challenges R7 to the older person and those that care for them (7). Currently, generalized service R8 provision does not satisfy the more specialized needs of people with dementia and R9 their caregivers, which can result in increased distress, loss of skills amongst older R10 people and caregiver breakdown (8). Research indicates that technology may provide R11 a useful tool for supporting older people within the home environment, reducing the R12 care burden on informal caregivers, whilst encouraging patient education and self R13 management (9, 10). Current dementia care services often fail to deliver care when R14 it is needed, requiring a more customized and flexible approach to service delivery. R15 Research has demonstrated that the use of technology within the home environment R16 can better support people with dementia and their caregivers through promoting R17 independent living, earlier identification of problems and improved self-monitoring R18 (9, 11-15). The use of intelligent home monitoring systems has been associated with R19 enhanced feeling of safety and security for older people (16). R20 R21 Research also suggests that assistive technologies can assist older people in staying R22 at home for longer, which is more cost effective than admission into a hospital or care R23 facility (17). The largest global evaluation of telecare technologies identified a range R24 of benefits, including reduced mortality rates, reduced hospital admission, reduction R25 in emergency admissions and reduced tariff costs (18). Despite these benefits, R26 concerns remain in respect to individual choice, privacy, risk-taking and the quality R27 of the technology, which have implications for policy and practice (19). Despite their R28 potential (20), there has been very little empirical evidence to justify the widespread R29 adoption of telecare systems (21, 22), particularly in respect to people with dementia. R30 Moreover, the market is still undeveloped and the care industry has only recently R31 begun to apply recent technological developments to dementia care (23). To partly R32 address the research shortfall, the evaluation addressed the following questions: R33 R34
68 • How was ADLife installed and introduced within the homes of clients? R1 • How was ADLife introduced within the participating healthcare organization? R2 • In what ways did the formal caregivers use the ADLife system within their R3 everyday working practices? R4 • How was ADLife evaluated in relation to the usability of the system? R5 • What was the impact of ADLife in terms of interventions, well being and R6 cost savings? R7 R8 The evaluation used a mixed methods approach which involved interviews with R9 informal and formal caregivers, analysis of project group meetings and diaries from R10 two nurses who worked daily with ADLife. The informal caregivers were interviewed 3 R11 at the start, after 3 and after 9 months of using the technology. The formal caregiver R12 was interviewed only once, at the 9 month stage, prior to the end of the evaluation. R13 Analysis of cost savings compared the costs of staying at home with the technology R14 against those costs accrued through a nursing home admission. R15 R16 methods R17 R18 Van Gemert et al. (2011) provide an eHealth research roadmap that identifies the R19 need for a holistic approach to the research and development of eHealth technologies, R20 including contextual inquiry, value specification, design, operationalization and R21 summative evaluation. This approach suggests that eHealth impact should be R22 determined by the extent to which the intended objectives of the technology are R23 realized. To this end, the evaluation of ADLife focused on (i)technology uptake: usage R24 behaviour and usability and (ii) the technology impact: care interventions, client well- R25 being, impact upon informal caregivers and cost savings. As ADLife was already an R26 operational system, a summative evaluation of the technology implementation and R27 subsequent operation and maintenance was conducted. This approach was adopted R28 because the introduction and implementation of the technology can have an impact R29 on subsequent usability and acceptability by end-users (24). Data collection at month R30 3 was undertaken with service users to establish the early barriers and facilitators to R31 the adoption of the system, while further evaluation at month 9 was undertaken with R32 service users and caregivers to also identify its potential benefits and disbenefits. R33 R34
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R1 research design R2 A field trial was conducted in the homes of 14 older people with dementia from R3 April to December 2010. The same suite of sensors was installed in each home, at R4 similar locations within the home environment, although exact room layout differed. R5 Two homecare organizations in the Netherlands participated in the evaluation. The R6 first homecare organization was involved in initiating the evaluation (by financing R7 the evaluation and assisting in the design of the objectives), and were partofa R8 project group that also included researchers. This organisation was actively involved R9 in recruiting and interpreting the ADLife client data. The clients recruited from this R10 organization were regularly visited for personal guidance and education on their R11 dementia by the formal caregivers and were also engaged as project group members. R12 The second homecare organization only participated in recruiting clients for the R13 evaluation, and did not participate in the project group or in the interpretation of R14 the data. R15 R16 study participants R17 The inclusion criteria for clients participating in the evaluation was that they currently R18 received homecare (housekeeping, nursing, personal guidance), but they were not R19 all personally known to the formal caregiver who interpreted the data. The clients R20 did not all commence their involvement at the same time as there were delays in R21 recruiting clients from the homecare organizations; three clients commenced later R22 in the project and did not participate for the full trial duration of 9 months (one R23 participated for a duration of 4 months, one for 7 months and one for 8 months). R24 The formal caregivers selected clients diagnosed with dementia with a forecasted R25 expectancy to live at home for a minimum of 9 months. This was a subjective R26 assessment undertaken by the same two formal caregivers interpreting the ADLife R27 data (for the first organization) and by the team leader (for the second organization). R28 The age of the participants ranged from 58 to 87 years with a mean of 78 and the R29 MMSE (1=severe dementia and 30=no dementia) ranged from 13 to 29 with a mean R30 of 23. The fourteen participants consisted of six females and eight males, seven R31 participants were recruited from the first homecare organization and seven from the R32 second homecare organization. R33 R34
70 The formal caregivers (two nurses, occupational therapist, specialist elderly care R1 medicine, project manager, technician and research assistant) participated in the R2 project group and reports of their meetings were used as data to determine their R3 opinions of ADLife. Two female nurses who worked daily with the ADLife system R4 were interviewed and asked to keep a diary. Both had a college-level education and R5 each had worked for the organization for 27 years. The project group members were R6 all female, except the technician, two of whom were college-level educated and R7 five were university educated. All formal caregivers, except the technician, had no R8 previous experience of working with sensor technologies. R9 R10 Fourteen informal caregivers included four partners of ADLife clients (three living 3 R11 in the same house as the client), four daughters, one daughter in law and five sons. R12 Their ages ranged from 35-79 years and gender distribution was eight females and R13 six males. The total number of years spent caring for the client ranged from less than R14 1 year to 12 years with a mean of 4.2 years. R15 R16 Using adlife R17 The formal caregivers monitored the ADLife sensor data for six weeks to establish R18 typical daily activity patterns of clients. These typical patterns then allowed the formal R19 caregivers to identify changes which might require an intervention. During this time R20 they received initial training in how to read and interpret the data. Following this, R21 the data were monitored for duration of nine months (trial length) by the formal R22 caregivers. The formal caregiver was required to contact the person with dementia R23 or a nominated informal contact person (friend or family member) if deviations in R24 the normal activities of the client highlighted the need for intervention. Algorithms R25 within ADLife generated a “red alert” to highlight sudden deviations in the thresholds R26 for each client. The data collected from the ADLife system can be seen on the website R27 screenshots in figures 1 and 2. Figure 1 shows daily data for the specific sensors, R28 where darkest grey (normally red) indicates a situation requiring intervention (as can R29 be seen on December 8, 2011 for the movement sensor in the bathroom, row 5), R30 light grey (normally yellow) identifies a potentially emerging situation and middle R31 dark grey (normally green) symbolizes that the data are within an expected threshold R32 for that client. The data for each activity are displayed for both the last 7 days and R33 R34
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R1 the last 28 days, allowing for a longitudinal interpretation. Figure 2 shows the activity R2 data from one sensor across the duration of one day, providing an example of when a R3 client has been located in the hallway, determined by a movement sensor. Figure 3 is R4 activity from one sensor for different hours which describes the number of activities R5 in the hallway during that time period. R6 R7 R8 R9 R10 R11 R12 R13 R14 R15 Figure 1 Data screenshot ADLife, dark grey (normally red) =emerging situation, light grey (normally yellow) = slightly emerging situation and middle grey (normally green) =no emerging R16 situation. R17 R18 R19 R20 R21 R22 Figure 2 Data screenshot ADLife, with daily activities at a specific time in the hallway. R23 R24 R25 R26 R27 R28 R29 R30 R31 R32 R33 Figure 3 Data screenshot ADLife with the number of activities on a specific time in the hallway. R34
72 interviews with informal caregivers R1 A total of 38 semi-structured interviews were conducted with informal caregivers; 13 R2 of these were undertaken immediately prior to using the technology, 11 follow-up R3 interviews were conducted at or after the three months stage and 14 post-interviews R4 were conducted. As three participants joined the study at a later stage, a decision R5 was made not to conduct the month 1 and month 3 interviews. For one informal R6 caregiver, the interview at month 3 was not conducted due to personal reasons. R7 Undertaking interviews with clients was considered, but not conducted because of R8 the levels of cognitive impairment. However, in some cases the client was present R9 at the interview with the informal caregiver and also contributed to the discussion. R10 3 R11 All participants were provided with an information sheet describing the aims and R12 objectives of the evaluation and a consent form was signed where participants R13 agreed for their comments to be used in the publication of the research findings. R14 For those clients engaged in the trial who were unable to provide their consent R15 due to an advanced stage of dementia, their informal caregivers were asked to R16 sign on their behalf. A semi-structured interview guide was used which included R17 the following topics: implementation of ADLife system, usability of the technology, R18 impact on care intervention and effects on well being, as key dimensions defined R19 in the CeHRes roadmap (24). All interviews were tape recorded and transcribed for R20 analysis purposes. R21 R22 interviews and diaries with formal caregivers R23 An interview at the end of the evaluation was conducted with the two nurses that R24 worked with the ADLife system daily, using an adapted semi-structured interview R25 guide from the one used for the informal caregivers but which focused more R26 specifically on the impact of technology on the working practices of caregivers and R27 the usage behaviour of ADLife. All the interviews were tape recorded for analysis R28 purposes. The two nurses were asked to keep a diary of their usage of ADLife, R29 comprising columns for the date, readings for any deviant or abnormal data from R30 the sensors, subsequent contact initiated with client or contact person, action taken R31 as a result and general operational issues (for example if a sensor was not working R32 R33 R34
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R1 or the data were not visible on the website). Nurses were asked to keep records for R2 individual clients. As the trial progressed, the nurses did not maintain the use of all R3 fields in the diaries due to the level of additional work, but the data were used in the R4 evaluation and as a stimulus within the interview situation to discuss specific cases. R5 R6 Project group meetings R7 The researcher was a member of the project group and recorded the key findings R8 and action points from the meetings of the group. In total there were 8 project R9 meetings over a period of 14 months (the first project group meeting was 4 months R10 prior to client recruitment). All the formal caregivers signed a consent form agreeing R11 that the content of the meetings could be used in the evaluation and in subsequent R12 publications. In these meetings, the evaluation specifically focused on recording R13 information related to caregiver experiences whilst using the ADLife system. R14 R15 cost analysis R16 A key objective of the evaluation was to determine the costs of living at home with R17 ADLife, compared with living in a nursing home. Costs (in euro) included: R18 - Cost of living in a nursing home. In the Netherlands there is a legally fixed R19 price for the expenses of a person with dementia living in a nursing home R20 and this figure was used; R21 - Cost of purchase and installation for ADLife sensors; R22 - Initial fee for activating ADLife (not related to number of clients); R23 - Monthly fee for the use of ADLife per client (including troubleshooting R24 service); R25 - Average monthly cost for homecare per client; R26 - Average monthly cost per user (formal caregiver required to interpret the R27 data); R28 - Average monthly cost of formal caregivers for analysing ADLife data per R29 client (number of hours multiplied by the wages of the caregivers). R30 R31 R32 R33 R34
74 data analysis R1 The interviews with the informal and formal caregivers were thematically analyzed R2 (25), which involved reading the transcripts several times and subsequently identifying R3 and coding recurring themes across the transcripts. A second researcher also coded R4 the interviews to minimize single researcher bias. The notes from the project group R5 meetings and the data from the caregiver diaries were also thematically analyzed. R6 For the cost analysis a number of calculations were undertaken in Excel 2007: R7 - Total governmental expenses of someone living at home with technology; R8 - Total governmental or health insurance expenses for someone living in a R9 nursing home; R10 Comparison between living at home with technology and living in a nursing home: 3 R11 - Calculations for a comparison of 10 clients up to 150 clients (in increments R12 of 10); R13 - Calculations for a comparison from 1 month up to 12 months of living at R14 home or in a nursing home; R15 - Calculations for the use of ADLife at home with increasing costs of homecare. R16 R17 R18 results R19 R20 The evaluation provided a number of key results: the introduction of ADLife, the R21 usage and usability, the impact on care interventions, the wellbeing of the clients and R22 informal caregivers and the cost analysis. R23 R24 introduction of adlife R25 The research findings indicated that the way in which ADLife was introduced to R26 caregivers and users needed to be improved. As formal caregivers had no prior R27 experience with the system they had problems clearly describing ADLife during the R28 recruitment process. Subsequently, informal caregivers had misconceptions about R29 ADLife which impacted on levels of acceptability: R30 - Perception that ADLife would work as an alarm, for example when a client R31 falls and needs emergency response, when in reality the system was R32 designed as an advanced, early warning system. R33 R34
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R1 - Perception that the movements of the older person might be visible R2 through real time video images, when in actuality only frequency of sensor R3 activation was recorded. This resulted in two informal caregivers deciding R4 not to participate because they felt the system was too intrusive. R5 - Being unaware of the minimal costs to the client involved in transferring the R6 client data across the server. Although this was not seen as an issue which R7 would influence their decision to have the system installed, they felt that R8 they should have been informed from the outset. R9 R10 These results highlight the need to fully inform clients and informal caregivers prior R11 to installation. This could be undertaken by skilled technicians, but it was felt that R12 this information would better come from the formal caregivers, given their role in R13 delivering care and their regular interaction with ADLife. Effective training is required R14 if formal caregivers are to be in a position to reassure clients, address everyday issues R15 and challenge perceptions of privacy and confidentiality and ensure better levels of R16 acceptability. R17 R18 Informal caregivers also reported a number of issues relating to the presence of R19 ADLife within the home environment. Some clients appeared unsettled by noises R20 and flickering lights from the ADLife base unit, potentially raising concerns about R21 deteriorating health. The informal caregivers felt that a user manual would have R22 been helpful in alleviating concerns and providing information and guidance. This R23 further highlight the importance of patient education. While this could be provided R24 by a technician, it is more meaningful when provided by the formal caregiver, such R25 that the technology becomes more situated in the context within which care is being R26 delivered. R27 R28 A number of issues were also reported within the project team meetings. The formal R29 caregivers commented that they felt isolated and ‘all alone in the project’, because R30 other formal caregivers outside the project group were not aware of the ADLife R31 evaluation. This deprived formal caregivers of an outlet to share their experiences R32 and the challenges of being involved in the trial. Whilst it was the responsibility R33 R34
76 of the internal project manager to publicize the project across the healthcare, R1 time constraints hindered her progress. This resulted in the feeling amongst R2 formal caregivers that there was little organizational commitment to the project, R3 undermining levels of enthusiasm. Progress was also hindered by members of the R4 project group who had to disengage from the project due to sickness, retirement R5 and lack of time, impacting on the continuity of the evaluation as new participants R6 needed to be orientated to the aims and objectives of the evaluation. R7 R8 A number of the informal caregivers felt ADLife was unnecessary, because the clients R9 were only experiencing mild forms of dementia and did not require any intervention. R10 However, some caregivers suggested that installing the sensors prior to the onset 3 R11 of more serious dementia was advantageous, as the client had the mental capacity R12 to understand the purpose of the sensors, be more able to gain proficiency in the R13 workings of the system and be in a position to exercise individual choice when R14 agreeing to have the equipment installed. Embedding the system at an early stage R15 has the potential to increase levels of acceptability in the long-term, as opposed to R16 introducing the technology as a reaction to a sudden deterioration and often when R17 the patient is not in a position to ‘learn’ new technology. R18 R19 Usage and usability of adlife R20 At the beginning of the evaluation, the formal caregivers experienced difficulties in R21 reading and interpreting the client data. A manual was not available that provided R22 guidelines for how to analyze the data readings and output graphs, and a technician R23 was required to provide extra training, which was judged positively by the nurses. R24 R25 For most of the ‘deviations in data’ which required an intervention, the formal R26 caregiver contacted the informal caregiver as opposed to the client themselves. Whilst R27 excluding the client might potentially undermine the autonomy of the older person, R28 informal caregivers were often key stakeholders in the decision-making process. The R29 ongoing communication of patient data between the informal and formal caregivers R30 was an issue discussed in the interviews. Informal caregivers felt more informed R31 when formal caregivers discussed specific client data with them and translated this R32 R33 R34
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R1 information within the context of the clients’ condition. Informal caregivers felt that R2 this communication could have been a more regular, systematic aspect of the care R3 delivery process. However, formal caregivers felt it was inappropriate to share client R4 details (regarding their health and well-being) with the informal caregivers, given R5 issues of privacy and confidentiality. This raises the broader issue of which individuals R6 have access to ADLife data and the extent to which this should be shared across R7 different groups to assist in the decision-making process. Whilst the relationship R8 between the informal caregiver and the older person is an important aspect of care R9 delivery, the sharing of data is a sensitive issue, given that the older person may not R10 wish to share personal or private information. R11 R12 Formal caregivers reported that the act of interpreting the ADLife data was valuable R13 in providing a better understanding of the home context of individual clients. An R14 example of this was a client who had a housekeeping service on a specific day, which R15 triggered an alert by ADLife. The two nurses reading the data requested information R16 from the organization responsible for housekeeping to provide further details on R17 their participating clients, so they could better monitor activity in and out of the R18 home. Thus, the system had the potential to generate data which stimulated a form of R19 enquiry that further strengthened the knowledge of the caregiver, thus establishing a R20 more holistic understanding of the client. R21 R22 The in-built email alerts provided by ADLife to the caregivers was reported as being R23 valuable to ensure continuous monitoring of the older person. Given their time R24 commitments nurses were often only able to directly access the ADLife data twice R25 per week, and the alerts provided an extra layer of security for the older person R26 and ensured a timely response. ADLife had the potential to ‘fill the gaps’ between R27 caregiver visits, furnishing the formal caregiver with information to which they R28 previously had no access. R29 R30 Formal caregivers suggested possible improvements to the interface of the ADLife R31 website which would promote overall usability and included: R32 R33 R34
78 • The graphs for each sensor were only visible for the specific day being R1 monitored, whilst the caregivers felt it would have been useful to see data R2 from previous days to identify long-term trends. R3 • A number of the bars in the graphs were too small, making them difficult to R4 interpret. R5 • The meaning of some bars was not intuitive, preventing easy readability of R6 the data. R7 R8 There were a number of initial operational issues which impacted on the reliability R9 and accuracy of the data. The most commonly reported operational issue was R10 that the data were not transferred, resulting in formal caregivers being unable to 3 R11 access information on the condition of the patient, raising the possibility that they R12 would not be alerted to situations which require intervention. Second, continuous R13 transmission of data through the telephone line prevented the client from making R14 outgoing telephone calls. This was a source of frustration and anxiety for a number of R15 clients and was resolved by adding a redundant server, while a restriction was put on R16 the number of attempts for sending the data. Third, a number of the bed mat sensors R17 were particularly sensitive, reporting higher number of bed visits than was the case, R18 and had to be replaced several times before the readings were reliable. Although R19 formal caregivers were able to remove outliers in the data (through their knowledge R20 of the client), this had the potential to generate ‘false positives’, providing caregivers R21 with erroneous data when making important clinical decisions. These ‘teething’ R22 issues created a feeling that the data were unreliable, undermining confidence in R23 using the system as a decision-making tool. R24 R25 Informal caregivers felt that ADLife would be more useful if it also monitored R26 emergency situations, for example to identify a fall event, rather than as a preventive R27 tool. This would require combining the monitoring of long-term trends with an R28 alarm response system to alert the authorities when in need of assistance. The R29 future development of ADLife may consider the potential to integrate an alarm R30 response system within the existing system architecture, or to combine with existing R31 technologies currently on the market. R32 R33 R34
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R1 Finally, the formal caregivers commented that it would be valuable if clients were able R2 to inform them when fluctuations from the typical ADLife data could be expected (for R3 example, leaving the house to visit friends for the day). In this way formal caregivers R4 would know that they do not have to unnecessarily respond. However, requesting R5 input from the user should not challenge the freedom and autonomy of the older R6 person such that it creates a feeling of dependency each time the older person R7 wishes to leave the home or deviate from ‘normal’ patterns of activity. R8 R9 impact of care interventions R10 Although not quantitatively proven, formal caregivers in the project group believed R11 ADLife could assist those living with dementia to remain at home for a longer period R12 of time, as the system provided the possibility for earlier, timely interventions to R13 reduce the need for hospital visits and delay admittance to nursing home care. For R14 example, when the ADLife data demonstrate that an older person is not cooking R15 their own meals independently, then a meal service can be implemented. The formal R16 caregivers noted that they were unable to visit and observe clients every day and R17 may not be aware of the rapidly changing needs of the older person and an alert R18 could provide a prompt recommending early intervention. R19 R20 In this project, two ‘situations’ occurred where ADLife data prompted ‘just in time R21 care’ in contrast to ‘just in case care’. In the first situation, a person was identified R22 from the sensor data as sleeping in his chair in front of the television instead of his R23 bed, prompting informal caregivers to commence a ‘bedtime’ service. This involved R24 calling their father on the telephone to prompt him to go to his bedroom. In the R25 second situation a person was identified as not using the salt dispenser, which was in R26 the closet with a door sensor, normally the client always used this for cooking. This R27 identified that the person was not eating hot meals anymore. This prompted the R28 caregivers to implement a meal service for the client. Thus, ADLife data combined with R29 the experience of both the formal and informal caregiver prompted interventions to R30 address the deteriorating condition of the client. Conversely, the formal caregivers R31 mentioned that if a person can prepare their own meals and the sensors show R32 evidence of this, then it would be possible to discontinue the meal service. Thus, R33 R34
80 ADLife has the potential to support the person-centred needs of the older person, R1 tailoring service provision to the emerging needs of the client and not one that R2 perceives dementia as a deteriorating condition. However, ADlife is not a failsafe R3 system and its limits have to be recognised. For example, there was a situation (client R4 did not drink enough and became dehydrated) which became urgent, but which was R5 not recognized by the ADLife system. R6 R7 impact on well-being R8 Whilst concerns of privacy were expected to be raised as a result of the visibility R9 of sensors within the homes of the clients, informal caregivers reported that most R10 clients were not aware of the sensors in the home, even when they witnessed the 3 R11 installation. They reported that the small size of the ADLife sensors ensured that R12 they quickly became an acceptable feature of the home environment immediately R13 following installation. For those clients who were aware of the sensors, ADLife R14 afforded a sense of safety and security, knowing that they were being monitored by R15 the formal caregiver and that the caregiver was in a position to respond if there was R16 any notable deterioration in condition. R17 R18 A particular concern amongst clients and caregivers is that dementia is characterized R19 by periods of forgetfulness which can compromise health and well-being. One of R20 the clients, who was conscious that she experienced episodes of forgetfulness, often R21 failed to remember to undertake important everyday tasks which were important, R22 for example taking medication or remembering to eat. Having a system which alerted R23 caregivers to deteriorations in condition provided the client with a perception that R24 there was an additional ’security net’, which was continuously monitoring him. R25 Whilst this can be deemed a positive feature of the system, further work is necessary R26 to determine if this may be a disadvantage over time, if the older person develops R27 an over-reliance upon the system as opposed to acting independently. However, R28 ensuring that older people are supported within their home was seen as integral to R29 older people retaining a sense of personhood, providing a private domain to express R30 their freedom and autonomy. If ADLife could provide an useful tool in helping people R31 to remain at home (with a sustained quality of life and high standards of service R32 R33 R34
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R1 delivery) then this was seen as beneficial to the welfare of the older person. R2 R3 Impact on well-being of the informal caregiver R4 In addition to the safety and security benefits highlighted by formal caregivers and R5 clients, the informal caregivers reported that ADLife alleviated their anxieties and R6 concerns when they were not able to undertake personal visits or make telephone R7 calls. Although the caregivers did not report a reduced burden of care, the system R8 was seen as supportive to the tasks they carried out, freeing up their timeto R9 engage in activities and tasks that were restorative of their well-being. One of the R10 caregivers mentioned that she felt more comfortable spending time outside, for R11 example shopping or visiting a friend. Another informal caregiver reported that R12 they would feel more comfortable going away on holiday, knowing that the formal R13 caregivers were assisted with ADLife and could monitor the client in their absence. R14 This reduced the necessity for informal caregivers to make contact with the clients R15 everyday, reducing the demands on their time and alleviating worry. However, R16 further investigation is required to establish if the use of ADLife would reduce visits R17 from friends and family members, and the impact that this will have an on the overall R18 well-being of the older person given the importance of face-to-face social contact. R19 ADLife appeared to have no direct impact on supporting caregivers with those care R20 giving tasks which caused the greatest burden, such as grocery shopping, contacting R21 service providers, and managing the clients’ finances. One of the caregivers reported R22 that in some circumstances ADLife may even provide an extra burden of care, given R23 that the sensors might detect certain situations where additional care was required, R24 requiring further caring responsibility. R25 R26 A number of the caregivers commented that they valued the extra information R27 provided from the ADLife sensors, providing them with additional information R28 through which they were able to establish a more nuanced understanding of the R29 activity patterns and conditions of the person they were caring for. For example, to R30 identify if the person they are caring for is as active as they say, using the ADLife R31 system as a form of validation to confirm self-reports by the older person. Others R32 used ADLife to provide more specific information on behaviours and movements as R33 R34
82 related to the condition of the older person. For example the number of times that R1 one of the clients living with prostate cancer had frequented the toilet during the R2 day. While ADLife can provide a more holistic picture of health and well-being of the R3 older person, it also has the potential to engender further interventions through the R4 information it generates, which may not be deemed desirable by the older person R5 themselves. R6 R7 Other caregivers reported that the person they were caring for did not experience R8 any situations which directly required an intervention. However, they did feel that R9 the system could potentially be useful if the state of dementia of the client was to R10 deteriorate, requiring closer monitoring and more frequent intervention. For one 3 R11 client, the ADLife system highlighted deteriorations in health status and condition, R12 such as a disturbed sleep rhythm, which might provide a useful piece of information R13 in deciding when it was appropriate to admit the client to a nursing home. This R14 demonstrates that assistive technologies can be powerful decision-making tools in R15 their own right, yet also highlights the potential dangers arising from decisions that R16 are based solely on the output from the technology, rather than balanced decision- R17 making which considers the needs and rights of the older person. R18 R19 Cost analysis R20 The cost analysis indicated savings for clients remaining at home with technology R21 compared with admission to a nursing home (Table 1). The cost calculation comprised: R22 R23 Costs at home with technology: Purchase and installation (2597.75) * Number of R24 clients + Onetime fee (1300) + Monthly fee ADLife and homecare (2788.69)* Number R25 of clients*Number of months + Monthly cost formal caregiver (70.59)* Number of R26 clients*Number of months + Monthly costs for user (1 person) (74.17)* Number of R27 months = Final costs living at home with homecare and technology. R28 Minus R29 Costs of nursing home: Monthly cost per client * Number of months. R30 R31 R32 R33 R34
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R1 table 1 Cost (in euro) for staying at home with technology versus staying in nursing home R2 at home nursing home R3 Type Cost in euro Type Cost in euro Purchase and installation 2597.75 (one time cost) Monthly fee 5413.86 R4 ADLife per client per client R5 Onetime fee for starting with 1300 ADLife (not related to number R6 of clients) R7 Monthly fee ADLife per client 67.50 R8 (including troubleshooting service) R9 Average monthly cost for 2721.19 R10 homecare per client R11 Average monthly cost per 74.17 user (person reading out the R12 data). In this project 1 person. R13 Average monthly cost formal 70.59 caregivers for using ADLife R14 per client R15 Subtotal per client: 2597.75 onetime fee R16 4233.45 per month total: 2597.75 (one time) + total: 5413.86 R17 4233.45 (per month) +1300 R18 (one time fee not related to number of clients) R19 R20 Compared to staying in a nursing home, for 10 clients living at home with ADLife for R21 duration of two months, the savings were €23,665, while for 50 clients the savings R22 were €124,122 (Figure 2). The black line demonstrates the forecasts for 10 clients R23 and the grey line for 50 clients. On the y-axis, the amount of savings in euro can be R24 seen and the x-axis displays the number of months living at home as opposed to the R25 nursing home. R26 R27 R28 R29 R30 R31 R32 R33 R34
84 4233.45 (per month) +1300 (one time fee not related to number of clients)
Compared to staying in a nursing home, for 10 clients living at home with ADLife for duration of two months, the savings were €23,665, while for 50 clients the savings were €124,122 (Figure 2). The black line demonstrates the forecasts for 10 clients and the grey line for 50 clients. On the y-axis, the amount of savings in euro can be seen and the x-axis displays the number of months living at home as opposed to the nursing home.
1600 R1 1400 R2 1200 R3 1000 R4
800 10 clients R5 600 50 clients R6
Savings x € x Savings 1000 400 R7 200 R8 0 R9
-200 123456789101112 R10 Months 3 R11 Figure 4 Cost for staying at home minus staying at a nursing home (y-axis=savings in euro and
x-axis=months) R12 If the quantity of home care has to be increased (given an expected deterioration in condition as the person ages), there will eventually be a breakeven point at which a nursing home is less expensive R13 than the private home. For example, if a client in the Netherlands receives 15 hours of homecare, 4 If the quantity of home care has to be increased (given an expected deterioration in R14 hours of housekeeping service, 3 hours of personal guidance and visits to a day-care centre totalling 20 hourscondition a week, this as will the result person in approximately ages), there €5000 will eventually of monthly care.be a Thisbreakeven approximates point theat which R15 maximuma nursing which can home be spent is less on expensivehomecare before than athe nursing private home home. becomes For moreexample, cost effective. if a client in R16 With this amount of homecare, the cost savings for 10 clients can only be reached after a duration of 10 monthsthe stayingNetherlands at home receives compared 15 to hours living inof a homecare,nursing home 4 (as hours can beof seenhousekeeping in figure 5). Ifservice, the R17 homecare3 hours expenses of personalincrease above guidance the €5000 and a visitsmonth to it will a day-care be more cost centre effective totalling for an 20 older hours a R18 person to be admitted into a nursing home. week, this will result in approximately €5000 of monthly care. This approximates the R19 maximum which can be spent on homecare before a nursing home becomes more R20 cost effective. With this amount of homecare, the cost savings for 10 clients can only R21 be reached after a duration of 10 months staying at home compared to living in a R22 nursing home (as can be seen in figure 5). If the homecare expenses increase above R23 the €5000 a month it will be more cost effective for an older person to be admitted R24 into a nursing home. R25 R26 R27 R28 R29 R30 R31 R32 R33 R34
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R1 60 R2 40 R3 20 0 R4 -20 123456789101112 R5 -40 10 clients R6 -60 50 clients
R7 € x Savings 1000 -80 R8 -100 R9 -120 R10 -140 Months R11 Figure 5 Cost for staying at home with €5000 homecare in a month minus staying at a nursing R12 euro and x-axis=months) home (y-axis=savings in euro and x-axis=months) R13 Discussion R14 Overall dthisiscussion evaluation demonstrated promising results for the adoption of ADLife within the homes of older people living with dementia and the potential of the system to act as a supportive decision- R15 making tool for formal and informal caregivers. The evaluation indicates that ADLife has considerable R16 potentialOverall in supporting this evaluation people with demonstrateddementia through promising increased results feelings forof safety the adoptionand security of for ADLife the client and through ongoing monitoring of the condition of the older person, which is comparable R17 with resultswithin of otherthe homes studies of in older the field people of dementia living with and dementiatechnology (9,and 11-16). the potential As evidenced of thein other system R18 researchto (6), act ADLife as a supportiveprovides a potentially decision-making useful tool toolto assist for informal the decision-making and informal processcaregivers. to The enable older people with dementia to remain at home for a longer period of time, through the R19 provisionevaluation of an early indicates warning system that ADLifeto detect has a situationconsiderable before potential it requires inemergency supporting intervention. people with R20 ADLife provideddementia the through potential increased to deliver morefeelings personalized of safety careand andsecurity achieve for cost the savings client whenand through compared to costs of staying in a nursing home. These savings are more pronounced when projected R21 ongoing monitoring of the condition of the older person, which is comparable for an increased number of clients or when clients use ADLife over a longer period of time. However, R22 the literaturewith results on ageing-in-place of other studies suggests in that the the field home of environment dementia isand a locus technology of meaning (9, for 11-16). the As R23 older person,evidenced as a place in other where research they can retain(6), ADLife a sense provides of independence a potentially and well-being useful (17). tool The to assist privacy of older people living at home may be compromised through the use of monitoring R24 technologiesin the (19), decision-making as the ways in which process the informationto enable older was generated, people with shared dementia and made to visible remain to at R25 others washome a concern. for a longer Those periodresponsible of time, for commissioning through the care provision should considerof an early both thewarning cost andsystem well-being benefits of technology, when evaluating its efficacy. R26 to detect a situation before it requires emergency intervention. ADLife provided the R27 The issuepotential of innovation to deliver and deployment more personalized of technologies care suchand asachieve ADLife costalso emergedsavings aswhen a key compared issue. Technology adoption requires top-down support from the homecare organization to provide formal R28 caregiversto costswith the of capacity staying and in flexibility a nursing to home. integrate These ADLife savings within theirare everydaymore pronounced working when R29 practices.projected Technologies for an have increased the potential number to change of clients the care or when delivery clients process, use and ADLife formal over caregivers a longer R30 need the freedom within their role to ‘learn’ how to best utilize the technology such that it yields efficiencyperiod savings of andtime. becomes However, an integral the literature part of the careon ageing-in-place delivery routine. Organizationalsuggests that the home R31 commitmentenvironment is also required is a locus to ‘push’ of meaning the technology, for the such older that person, it is seen as by a formal place caregivers,where they can clients and informal caregivers as key component of care and is more deeply embedded in the R32 retain a sense of independence and well-being (17). The privacy of older people living culture of supporting older people. R33 R34 In addition to organizational support, there were a number of operational and design issues which needed to be resolved before the system could be introduced and relied upon as a decision-making tool. Firstly, the data need to be presented in a way that it can be easily interpreted by formal caregivers.86 Formal caregivers need to be actively involved in determining the ways in which data are at home may be compromised through the use of monitoring technologies (19), as R1 the ways in which the information was generated, shared and made visible to others R2 was a concern. Those responsible for commissioning care should consider both the R3 cost and well-being benefits of technology, when evaluating its efficacy. R4 R5 The issue of innovation and deployment of technologies such as ADLife also emerged R6 as a key issue. Technology adoption requires top-down support from the homecare R7 organization to provide formal caregivers with the capacity and flexibility to integrate R8 ADLife within their everyday working practices. Technologies have the potential to R9 change the care delivery process, and formal caregivers need the freedom within R10 their role to ‘learn’ how to best utilize the technology such that it yields efficiency 3 R11 savings and becomes an integral part of the care delivery routine. Organizational R12 commitment is also required to ‘push’ the technology, such that it is seen by formal R13 caregivers, clients and informal caregivers as key component of care and is more R14 deeply embedded in the culture of supporting older people. R15 R16 In addition to organizational support, there were a number of operational and R17 design issues which needed to be resolved before the system could be introduced R18 and relied upon as a decision-making tool. Firstly, the data need to be presented R19 in a way that it can be easily interpreted by formal caregivers. Formal caregivers R20 need to be actively involved in determining the ways in which data are presented R21 to them, in a format which supports their time constraints and the requirement to R22 receive mobile updates of the condition of a patient whilst ‘on the move’. Secondly, R23 formal caregivers need to be appropriately up skilled such that they are in a position, R24 where they can make best use of the client data and translate the information into R25 action. To facilitate this, the role of the formal caregiver needs to be revisited, as R26 they have a role to play as ‘educator’ to the informal caregiver and client. Thirdly, R27 the information provided needs to be more closely aligned to the everyday concerns R28 and decision-making requirements of formal and informal caregivers. For example, R29 informal caregivers themselves reported that the ADLife system would function R30 more effectively if it also incorporated an alarm response system in the event of a R31 fall or situation requiring emergency intervention. The current iteration of ADLife R32 R33 R34
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R1 may be perceived as technology driven, as opposed to being built around the needs R2 of the actors and stakeholders. A closer fit could be achieved through utilizing the R3 holistic framework of Van Gemert et al. (2011) where the various stakeholders are R4 involved at all stages of product application and development (24). Future iterations R5 of ADLife should consider further user involvement to ensure that the product is R6 deeply rooted in the experiences of the various actors involved in delivering care to R7 the older person. R8 R9 While the results of the evaluation provide strong indications of the benefits of R10 ADLife, the study had a number of limitations. Firstly, it did not provide quantitative R11 evidence that ADLife could assist older people to avoid nursing home admission R12 and a longitudinal study is required to assess these benefits over time. Secondly, R13 the cost analysis was limited to a simple comparison of costs between homecare R14 and care delivered in a care facility. The study did not include mandatory personal R15 contributions under the Dutch system, the costs of informal care provision for those R16 people who live at home, or implementation costs which will vary across different R17 jurisdictions. Thirdly, the evaluation relied on the accounts of formal and informal R18 caregivers and future work should attempt to include the perspectives of clients, R19 even when they have dementia (26). Finally, it would have been beneficial to R20 systematically collect data on the ‘traffic light” system (red-yellow-green) used to R21 alert emerging situations for clients. These data would help in establishing the extent R22 to which clients maintained within the stable areas of green and yellow, as well as R23 documenting the ability of ADLife to highlight crisis situations and the subsequent R24 responses. This would provide evidence for the potential of ADLife in terms of keeping R25 people at home, preventing crisis interventions and subsequent cost benefits. The R26 present study provides an excellent platform for further research on ADLife, which R27 should include a larger cohort of participants and in-depth analysis of costs to R28 establish the benefits/disadvantages of using such technologies in dementia care. R29 Funding has been granted to broaden the work detailed in this paper, specifically to R30 expand the scope and timescales of the evaluation. The evaluation methodology will R31 be refined in light of the study limitations detailed above. R32 R33 R34
88 acknowledgements R1 Thanks to the healthcare organization ‘’Bruggerbosch’’, ‘’de Posten’’ and the company R2 Focus Cura BV for their support in conducting this evaluation. R3 R4 R5 R6 R7 R8 R9 R10 3 R11 R12 R13 R14 R15 R16 R17 R18 R19 R20 R21 R22 R23 R24 R25 R26 R27 R28 R29 R30 R31 R32 R33 R34
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R1 references R2 R3 1. Wimo A, Prince M. World Alzheimer Report. London: Alzheimer’s Disease International, 2010. R4 2. Bharucha AJ, Anand V, Forlizzi J, Dew MA, Reynoalds CF, Stevens S, Wactlar H. Intelligent R5 Assistive Technology Applications to Dementia Care: Current Capabilities, Limitations and Future Challenges. American Journal of Geriatric Psychiatry. 2009;17(2):88-104. R6 3. Wherton J, Monk A. Technological opportunities for supporting people with dementia who are living at home. Journal of Human Computer Studies. 2008;66(8):571-86. R7 4. Cash M. Assistive technology and people with dementia. Reviews in Clinical R8 Gerontology. 2003;13(4):313-9. 5. Tunstall. ADLife An Activities of Dailiy Living (ADL) monitoring Yorkshire: Tunstall UK; R9 2009 [cited 2011 December 21]; Available from: http://www.tunstall.co.uk/assets/ R10 literature/solution%20sheets/adlife_solutions_sheet.pdf. 6. Willems C. Team 290 Lifestyle Monitoring. Utrecht, The Netherlands: Vilans; 2009 R11 [cited 2011 December 20]; Available from: http://www.domoticawonenzorg.nl/ R12 smartsite.dws?ch=def&id=134101. 7. Brown J, Hillan J. Dementia. Edinburgh: Churchill Livingstone; 2004. R13 8. Bamford C, Bruce E. Defining the outcomes of community care: the perspectives of older people with dementia and their carers. Ageing and Society. 2000;20(5):543-70. R14 9. Cahill S, Begley E, Faulkner JP, Hagen I. ‘’It gives me a sense of independence’’- R15 Findings from Ireland on the use and usefulness of assistive technology for people with dementia. Technology and Disability. 2007;18(2-3):133-42. R16 10. Carswell W. A review of the role of assistive technology for people with dementia in R17 the hours of darkness. Technology Health Care. 2009;17(4):281-304. 11. Lauriks S, Reinersmann A, van der Roest HG, Meiland FJ, Davies RJ, Moelaert F, R18 Mulvenna MD, Nugent CD, Dröes RM. Review of ICT based services for identified R19 unmet needs in people with dementia. Aging Research Reviews. 2007;6(3):223-46. 12. Nijhof N, van Gemert-Pijnen JEWC, Dohmen D, Seydel ER. Dementie en technologie. R20 Een studie naar toepassingen van techniek in de zorg voor mensen met dementie en R21 hun mantelzorgers. Tijdschrift voor Gerontologie en Geriatrie. 2009;40(3):113-32. 13. Topo P. Technology studies to meet the needs of people with dementia and their R22 caregivers.A literature review. Journal of Applied Gerontology. 2009;28(5):5-37. 14. Duff P, Dolphin C. Cost-benefit analysis of assisitive technology to support independence R23 for people with dementia - Part 2: Results from employing the ENABLE cost- benefit R24 model in practice. Technology and Disability. 2007;19(2):79-90. 15. Cahill S, Macijauskiene J, Nygård AM, Faulkner JP, Hagen I. Technology in dementia R25 care. Technology and Disability. 2007;19(2-3):55-60. R26 16. Sixsmith A. An evaluation of an intelligent home monitoring system. Journal of Telemedicine and Telecare. 2000;6(2):64-72. R27 17. Tinker A. Housing for elderly people. Reviews in Clinical Gerontology. 1997;7(2):171-6. R28 18. Department of Health. Whole system demonstrator project: headline figures. 2011 [cited 2012 January 23]; Available from: http://www.dh.gov.uk/en/ R29 Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_131684. R30 19. Percival J, Hanson J. Big brother or brave new world? Telecare and its implications for older people’s independence and social inclusion. Critical Social Policy. 2006;26(4):888- R31 909. R32 R33 R34
90 20. Kubitschke L, Cullen K. ICT and Ageing European Study on Users, Technologies and Markets. European Commission; 2010 [cited 2012 June 6]; Available from: http:// R1 www.ict-ageing.eu/ict-ageing-website/wp-content/uploads/2010/D18_final_report. R2 pdf. 21. Barlow J, Singh D, Bayer S, Curry D. A systematic review of the benefits of home telecare R3 for frail elderly people and those with long-term conditions. Journal of Telemedicine R4 and Telecare. 2007;13(4):172-9. 22. Meyer I, Muller S, Kubitschke L. AAL markets: knowing them, researching them. R5 Evidence from European Research. In: Augusto JC, Huch M, Kameas A, Maitland J, R6 McCullagh P, Roberts J, Sixsmith A, Wichert R, editors. Handbook on AAL for Healthcare, Well-being and Rehabilitation. Amsterdam: IOS press; 2012. p. 346-68. R7 23. Sixsmith A. New technologies to support independent living and quality of life for people with dementia. Alzheimer’s Care Quarterly 2006;7(3):194-202. R8 24. Van Gemert-Pijnen JEWC, Nijland N, Ossebaard HC, van Limburg AH, Kelders SM, R9 Eysenbach G, Seydel ER. A holistic framework to improve the uptake and impact of eHealth technologies. Journal of Medical Internet Research. 2011;13(4):e111. R10 25. Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in 3 R11 Psychology. 2006;3(2):77-101. 26. Sixsmith A, Hammond M, Gibson G. Quality of Life and dementia. In: Vaaram M, Pieper R12 R, Sixsmith A, editors. Care-related Quality of Life in Old Age. New York: Springer; 2008. R13 p. 217-33. R14 R15 R16 R17 R18 R19 R20 R21 R22 R23 R24 R25 R26 R27 R28 R29 R30 R31 R32 R33 R34
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chapter 4
monitoring technology residential care: how assistive technology can support dementia care: a study about the effects of the ist Vivago watch on patients’ sleeping behavior and the care delivery process in a nursing home
Chapter 4 is based on: Nijhof N, van Gemert-Pijnen JEWC, de Jong GEN, Ankone JW, Seydel ER. How assistive technology can support dementia care: a study about the effects of the IST Vivago watch on patient’s sleeping behavior and the care delivery process in a nursing home. Technology and Disability. 2012; 24 (2): 103-115. doi:10.3233/TAD-2011-0339 Chapter 4
R1 abstract R2 R3 In this study, patients with dementia who exhibited a disturbed sleep/wake rhythm R4 wore a special watch which measured their sleep/wake rhythm. The main purpose R5 of this study was to gain insights into the effects of the watch on the sleep/wake R6 rhythm and on the care delivery process of patients with dementia. The research R7 questions focus on the introduction of the watch, its usage and usability, the R8 interventions that have been taken based on using the watch and the effects of the R9 watch on the sleeping behaviour of the patients. These questions were answered by R10 means of a mixed methods design: monitoring data about the sleep/wake rhythm, R11 keeping a diary about usage and care interventions related to the monitoring data; R12 observations, and in-depth interviews with caregivers about the implementation and R13 usage of the watch. It can be concluded that the watch has the potential to improve R14 the sleeping behaviour and the care delivery process. However, if the effects are to R15 be up scaled, a supportive infrastructure and adequate communication channels and R16 conditions for implementation, such as the possibility to try the technology, will be R17 required at first. R18 R19 R20 R21 R22 R23 R24 R25 R26 R27 R28 R29 R30 R31 R32 R33 R34
94 introduction R1 R2 The use of technology for people with dementia has received a lot of attention in R3 recent years due to the rapid rise in the number of people being diagnosed with R4 dementia. Worldwide, an estimated 35.6 million people suffered from dementia in R5 2010. By 2050 an increase of 115.4 million is expected. In 2010 57.7% of all people R6 with dementia are expected to live in low and middle-income countries, rising to R7 70.5% in 2050. The global costs for dementia in 2010 were 604 billion US dollars (1). R8 R9 Sleeping problems are common for people with dementia. Ancoli-Israel (2005) R10 reported that patients with dementia have increased sleep fragmentation (periods R11 of being awake), longer sleep onset latency (length of time from wakefulness to R12 sleep), decreased sleep efficiency (minutes of sleep compared with minutes of 4 R13 being in bed), decreased total sleep time (hours of sleep), and decreased slow wave R14 sleep (deep sleep). These changes in sleep result in excessive daytime sleepiness, R15 night-time wandering, confusion and agitation (sun downing)(2). When compared R16 to patients who live in their own homes, patients who live in a nursing home have R17 an even poorer quality of sleep, longer sleep onset, more phase-advanced sleep R18 periods, and a higher use of sedative-hypnotics (3). The psychological and medical R19 causes for sleeping problems among people with dementia are not only related to R20 the illness, but are also linked to getting older (4). Poor sleep patterns correlate with R21 issues such as health complaints, mental problems, a poorer subjective quality of R22 life, and an increased risk of having an accident or falling down (5-7). Support for R23 these sleeping problems is still urgently needed; one possible solution could be the R24 supportive use of technology. R25 R26 Different studies show that technology can be supportive in caring for people R27 with dementia (8-13). Nijhof et al. conducted a literature review in 2009 into how R28 different kinds of technology can support dementia care. The technologies used to R29 support dementia care can be divided into monitoring, signalling and social contact R30 technology for people with dementia. It can be concluded that technology can R31 significantly improve the quality of life and safety of patients with dementia (such as R32 R33 R34
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R1 less falling down). Effects related to supportiveness in the caregivers’ work in a social R2 care setting have not been researched in any great detail in these studies (10). R3 The limitation of the studies mentioned in this review is that they only deal with R4 small groups of patients. On top of this, the studies often focus on the end-users’ R5 satisfaction with the technology used, but not on the overall impact the technology R6 has on the organization of care and fulfilling the needs of the patients, their informal R7 caregivers and the professional caregivers. The overall conclusion that can be R8 drawn from the reviews is that the majority of projects are too technology-driven, R9 a mismatch exists between dementia patients’ needs and the existing technologies, R10 and that there is an even worse implementation strategy for the use of the technology R11 in the nursing home. R12 R13 Despite the shortcomings of the above-mentioned studies, the use of technology in R14 the field of caring for patients with dementia is necessary because of the growing R15 number of patients and the dwindling number of healthcare professionals. The use R16 of technology for vulnerable people in particular should be the focus area in eHealth R17 research. The gaps in existing eHealth research in general can be found in the field of R18 ‘missing best practice guidelines’, for the effective development and absence, of any R19 deployment strategies. There are a lot of ongoing eHealth initiatives, but the number R20 of evaluations being generated is rather small (14-16). Next to the evaluation of R21 an eHealth application, in the view of van Gemert et al. (2011) the development R22 of eHealth is intertwined with implementation. Implementation must be taken into R23 account right from the start, but upcoming implementation issues should also be R24 accounted for in the subsequent stages. The usability has his impact on the use of R25 the system also (17). R26 R27 When looking into the research gaps described above in more detail, this research R28 specifically examines the subjects of these gaps in a study that focused on people R29 with dementia. Given the aforementioned limitations, this study therefore focused R30 on the critical factors required for creating a match between technology, its users R31 and the context of usage (14, 16, 18-20). The focus in this research is how the watch R32 has been implemented and used, as well as the preliminary effects of the watch (21). R33 R34
96 The technology used in this specific study is a monitoring technology: the IST Vivago R1 watch as mentioned by Nijhof et al. (2009). It measures the sleep time, sleep periods R2 and circadian rhythm of the person who is wearing the watch. The Vivago watch has R3 been used before in several studies to measure whether the watch was comparable R4 with polysomnography and actigraphy; it showed comparable results (22, 23). In an R5 earlier study with the IST Vivago watch, a comparison was made between nursing R6 home residents who did not suffer from dementia and those who did, because R7 people with dementia often have sleeping problems. The residents with dementia R8 were found to have a lower daytime activity (p= 0.05) and higher nocturnal activity R9 (p= 0.015) than those without dementia (24). To the best of our knowledge, no R10 studies have been carried out to date regarding the implementation of the watch and R11 the effects on the healthcare delivery process. This study will focus on these subjects R12 using the following research questions: 4 R13 R14 • How was the watch introduced in the nursing home? R15 • How was the watch used by patients and caregivers? R16 • How was the usability of the watch and the system judged by the R17 caregivers? R18 • What kind of interventions did the caregivers carry out as a direct R19 result of using the watch? R20 • What kind of effects were observed relating to the effect on R21 sleeping behaviour and the care delivery process? R22 R23 methodology R24 R25 system description R26 In this research monitoring technology for patients with severe dementia who were R27 living in a nursing home has been used. As these patients are not capable of using R28 advanced technologies themselves, the technology should serve as an aid for the R29 caregiver and should not entail too much extra work. To date, the technology from R30 the IST Vivago Watch seems to be the most appropriate option. The Vivago watch, R31 as can be seen in figure 1, measures micro (by wrist muscles) and macro movement, R32 skin temperature, skin conductivity and can also function as a social alarm system. R33 R34
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R1 R2 R3 R4 R5 R6 R7 R8 R9 R10 R11 R12 R13 R14 R15 Figure 1 IST Vivago watch R16 The micro and macro movement measures the sleep/wake rhythm. An accelerometer R17 is embedded into the system. This is a sensor which measures the acceleration of R18 the wrist and the time-frame of this acceleration. The Vivago watch measures this R19 with a frequency of 33 times per second. This creates a curve which is opposed to a R20 calibration from 0 to 100%. This calibration is created by an auto-learning algorithm R21 which recognizes a patient’s sleep pattern, their waking hours and their movements R22 after 4 weeks. R23 R24 The computer system contains several options for activating the different functions R25 of the watch and to monitor the data it collects. In this study the only function used R26 was the measurement of the sleep/wake rhythm for people with dementia. The R27 social alarm system was not used because the nursing home wanted to focus on one R28 aspect at that time. The watch gives the following measurements for monitoring: R29 sleep period (periods asleep), sleep time and circadian rhythm (index night activity/ R30 index mean activity). To use the Vivago watch it is necessary to have the watch, the R31 software, a receiver and the technical installation that comes with it. The watch itself R32 costs around €315 and the total technical installation will cost around €1000. These R33 R34
98 costs are only the costs of the technology itself. To implement it in the organization, R1 an agreement of approximately 100 working hours for an external project manager R2 was made. This became 140 hours. The project manager had to spend more hours R3 than planned in order to successfully introduce the Vivago watch into the nursing R4 home. This was mainly due to a missing internal project leader within the nursing R5 home because of an internal re-organization. The nursing home met the expenses of R6 the technology system. R7 R8 research design R9 A mixed methods design was used. Firstly, a qualitative approach was used to R10 collect in-depth information through observations, interviews and a diary. For the R11 quantitative approach the monitoring data collected by the watch have been used. R12 The research questions were answered using several methods. 4 R13 • How was the watch introduced to the nursing home? R14 Interviews R15 • How was the watch used by patients and caregivers? R16 Diary, observations and interviews R17 • How was the usability of the watch and the system judged by the R18 caregivers? R19 Diary, observations and interviews R20 • What kind of interventions did the caregivers carry out as a direct R21 result of using the watch? R22 Diary and interviews R23 • What kind of effects were observed relating to the effect on R24 sleeping behaviour and the care delivery process? R25 Diary, interviews and monitoring data R26 R27 R28 R29 R30 R31 R32 R33 R34
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R1 All these methods combined gave an insight into the implementation and effect of R2 technology in a nursing home. The data were linked to each other in the following R3 ways: R4 • Diary and monitoring data; so if a specific intervention was noted R5 in the diary, the effect of this intervention in the monitoring data R6 was checked. R7 • Diary and interviews: if an intervention or remark was made R8 and the researcher decided that he/she would like to have more R9 information about it, then it became a question during the R10 interview. R11 • Interviews and monitoring data: if a specific intervention was R12 mentioned during the interview, the effects were checked by R13 looking in the monitoring data in more detail, in order to see R14 whether someone, for example, slept longer as a result of the R15 intervention. R16 • Observations and interviews: aspects seen by the researcher R17 during the observation process which needed more clarification R18 were mentioned during the interview. R19 R20 This selection of data collection methods was chosen because carrying out research R21 with a group of people who suffer from dementia is quite difficult. Directly asking R22 a patient with severe dementia to indicate what he or she thinks and feels about R23 the watch is not possible. So quantitative data was used to monitor the sleeping R24 behaviour from the perspective of patients and qualitative data was used to obtain R25 information about the introduction, usage, interventions and effect on thecare R26 delivery process from the perspective of the professional caregivers. The integration R27 of different methods is likely to produce more quality and scope in this research. R28 R29 sample R30 A total of 7 patients (out of 18) in the same department in a nursing home, which R31 consisted of patients with severe dementia, were selected to wear the Vivago watch R32 for a period of 6 months. Patients were selected by the caregivers using the following R33 R34
100 inclusion criteria: that they were living in one specific department of the participating R1 nursing home, that they exhibited a disturbed sleep/wake rhythm, and that they R2 had been diagnosed with severe dementia. The exclusion criteria were: permission R3 from the family caregiver was missing or patients refused to wear the watch. One R4 patient kept taking her watch off during night (because this was her normal day-to- R5 day routine) so the watch was given to another patient. It was not possible for the R6 researcher to ascertain the exact stage of dementia from patient-to-patient because R7 the nursing home did not use any psychological tests during the period when the R8 patients were living in the nursing home. R9 R10 Family caregivers agreed to participate in this study and signed a consent form to R11 that effect. With this consent, family caregivers confirmed that they understood the R12 purpose of the research and agreed to their input being used anonymously in the 4 R13 observations, diary and interviews for research and publication purposes. R14 R15 The caregivers were selected by their mid-level education. The interviews took place R16 in the caregiver’s office. R17 R18 The study included a 3-month period of using the watch which lasted from November R19 2008 until February 2009, with continuous monitoring throughout. R20 R21 data collection instruments R22 Monitoring data R23 The data gathered by the watch consisted of data which provide insights into the R24 sleeping and waking rhythm of a person with dementia and, with that, into the R25 effect on their sleeping behaviour. The exact data consist of measuring the sleep/ R26 wake rhythm in minutes, the sleep periods in frequencies of periods during which R27 that person was awake, and the circadian rhythm on a scale of 0 to 1. The circadian R28 rhythm measures night activity (22h-8h) divided by the mean activity (6h-24h). For R29 healthy sleepers the outcome is between 0.1 and 0.3, for poorer sleepers the score is R30 between 0.3 and 0.5, for worse sleepers it is between 0.5 and 1.0 and for the poorest R31 sleepers this can even be above 1 (25). The above-mentioned data were saved for a R32 period of 3 months and analyzed using SPSS 16.0 and Excel 2007. R33 R34
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R1 Diary R2 The second method involved having the caregivers keep a diary which provided R3 insights into the use, usability, interventions and effects of using the watch. At the R4 start of the project, the caregiver participated in an initial didactic training course R5 about this diary conducted by the project manager. They were given the diary for a R6 period of three months and were instructed how to fill out the daily log sheets. The R7 diary contained 7 columns; date, name of each individual patient, their sleep time, R8 their sleep period, the circadian rhythm (data from the watch), possible intervention, R9 and remarks about the watch. The caregivers were asked to report the details of R10 all the project participants every morning. The date was given in the format of dd- R11 mm-yy, the name of the patient was their last name, the sleep time was written R12 down in the total number of minutes, the sleep period in the number of periods they R13 were awake, the circadian rhythm could be seen in the log on the computer and the R14 possible intervention or remarks were transcribed in the caregiver’s own words. The R15 project manager contacted the caregivers each month to remind them about the R16 daily logs and encourage them to complete them. R17 R18 Observations R19 A qualitative and non-participatory observational study was conducted to obtain R20 insights into the use and usability of the watch. The caregiver was observed from 10 R21 am to 4 pm of a normal weekday. The researcher kept a log of events and described R22 them. The observations were based on the research questions, namely subjects such R23 as the use and usability of the watch. The purpose of this observation was to gain R24 a clear insight into the use of the watch in the organization and to do a contextual R25 inquiry. R26 R27 Interviews R28 Interviews (60 minutes) were carried out by the researcher with 5 caregivers R29 individually to gain insights into all the research questions as a more in-depth method R30 in relation to the other data. An interview session has three stages, orientation, R31 interview and wrap-up. The orientation (approximately 5 minutes) included an R32 explanation about the purpose of the interview, the caregiver could then ask any R33 R34
102 questions that they might have and the caregiver had to sign a consent form so the R1 interview could be audio-taped and collect artifacts. After the orientation, the real R2 interview started (approximately 45 minutes). A semi-structured interview scheme R3 was used with questions related to the introduction (how was the introduction and R4 what did they think about this?), actual usage behaviour (is the way the caregiver use R5 the watch, as described in the observation, the normal way?), usability (how do the R6 caregivers perceive the usability of the watch?), interventions and effects (what kind R7 of interventions did they carry out and what were the effects in terms of sleep time, R8 sleep periods, circadian rhythm and the care delivery process?). The last part was R9 the wrap-up part which involved a verbal thank-you and the caregivers being asked if R10 they were interested in seeing the final report. R11 R12 data analysis 4 R13 Monitoring data R14 The monitoring data obtained from the IST Vivago watch were analyzed using SPSS R15 16.0 and Excel 2007, using frequencies for the sleep time in minutes, sleep period R16 in the number of periods (1;2;3, etc.) and circadian rhythm in numbers between 0 R17 and 1; the lower the better (0.1; 0.2 etc.). The data collected through the IST Vivago R18 watch were analyzed in several ways. First of all the mean of the sleeping time was R19 calculated, the mean sleeping periods, and the mean circadian rhythm for all the R20 patients separately for the three months use of the IST Vivago watch. This means R21 gave an impression of the sleep from the persons in this study. Within this calculation R22 the intervention data were excluded, specifically the night after the intervention. R23 The interventions were no structural interventions, except one intervention. The R24 intervention of taking someone for a bath is an one-time only intervention. Because R25 of the one-time only frequency of this occurrence it was difficult to analyze the R26 effects of the interventions statistically. For the one-time only interventions we R27 compared the mean with the night results from the night after the intervention. For R28 example, did someone have a better sleep time in the night after taking a bath? R29 These results were compared with the standard deviation for that patient. A t-test R30 was used to compare the means before and aftera specific structural intervention to R31 conclude whether there were any significant differences in sleep-period, sleep time, R32 and circadian rhythm. R33 R34
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R1 Diary R2 After a period of 3 months, the data from the diary were analyzed to countthe R3 number and type of interventions, including the names of the patients and the dates R4 of the interventions. As noted earlier, the dates of these interventions were linked to R5 the monitoring data. This has been done for a specific patient on the specific date of R6 the intervention to see if the interventions had any effect on the sleep/wake rhythm. R7 The remarks were coded in usage, usability and effects in a coding scheme for the R8 diary. R9 R10 Observations R11 The analysis focused on our reports of the observations. These were analyzed R12 thematically by noting and coding each piece of information in the observation notes R13 and allocating these to the themes of the research (actual usage and usability). This R14 was done by two researchers who discussed and iteratively reviewed the notes into R15 the research questions. This process involved transferring each relevant note in the R16 coding scheme in Excel. R17 R18 Interviews R19 For the analysis of the interviews a coding scheme in Excel has been used. The coding R20 scheme was related to the topics based on the research subjects. The transcripts R21 were read several times in their entirety to capture the experiences of the caregivers R22 and to aid in identifying the coding scheme. Two researchers coded these interviews. R23 In the event of a disagreement, the researchers discussed the categorization of the R24 problems in order to reach consensus. R25 R26 results R27 R28 sample description R29 In total, 40% of the people from one single department within this particular nursing R30 home wore the watch. Seven (7) women wore the watch and the average age of the R31 patients was 87 years, with a minimum of 71 and a maximum of 95 years of age. All of R32 them had entered the phase of severe dementia and were identified as bad sleepers R33 by the caregivers. R34
104 In total, five (5) caregivers were interviewed after they had used the Vivago watch R1 for a period of 3 months. These mid-level educated caregivers were all woman and R2 the average age was 51 (age range 45-57). They were the caregivers of the people R3 wearing the Vivago watch. R4 R5 introducing the Vivago watch R6 The interviews showed us that introducing the watch to the caregivers was planned R7 to take place at a regular team meeting. The project manager from the Vivago watch R8 project was supposed to explain the functionalities of the watch. The caregivers did R9 not know that the presentation would take such a long time during their regular R10 team meeting. This was especially the case because the nursing home was in the R11 middle of a re-organization process at that time and the caregivers expected to hear R12 something more about this re-organization instead of a protracted presentation 4 R13 about the Vivago watch. Moreover, the project did not start at the right time because R14 of this re-organization. All the caregivers were sceptical at the start of the project: R15 they did not think that the watch could be useful in their care-giving tasks. R16 R17 From the interviews it appeared that several activities were carried out to introduce R18 the watch. Two caregivers became the opinion leaders of this project (they were R19 interested in the project themselves) and participated in the project group and R20 received training from the project manager in how to use the watch. These caregivers R21 were the ones who taught the other caregivers how to use the watch. R22 R23 At the start of the project the caregivers themselves wore the watch as well, to let R24 the patients get used to the watch which was judged positively by the caregiver. R25 Every morning the caregivers had to print out the sleep/wake rhythm data for each R26 patient and insert these data into the healthcare record of that specific patient. R27 During this stage, the caregivers and patients were introduced to, and began getting R28 used to, wearing the watch and using the computer system for a period of 6 weeks. R29 R30 In the interview the caregiver told us that the patients’ family members were R31 introduced to the Vivago watch one evening at a face-to-face meeting that was R32 R33 R34
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R1 especially organized for this purpose. The project manager informed the family R2 about the watch, after which family members were able to ask questions and give R3 permission for their elderly relative to wear the watch. R4 R5 Usage of the watch R6 The observations showed us that at the start of the day the caregivers began by R7 writing down details of the monitoring data in the diary. every morning they would R8 walk down to the ground floor where the computer which contained the monitoring R9 data was located, press the ‘’print’’ button, walk to a different room to get the print- R10 out, walk back to their office on the first floor, write down the details of several R11 patients, and place a print-out in the healthcare record of the patient in question. R12 This way of usage can also be seen in the diary entries and interviews. R13 R14 The interviews also showed us that during regular team meetings theydid not discuss R15 the watch or the interventions that were used. Not all the caregivers knew about the R16 various interventions that had already been conducted with the different patients. R17 R18 Usability of the watch R19 In the interviews and diary entries, the caregivers mentioned that the appearance R20 of the Vivago watch is not user-friendly and should be improved. At the moment, R21 the fact that the Vivago watch is far too big for the small and fragile arms of elderly R22 people is often mentioned in the interviews. Furthermore, it was noted down in the R23 diary that the watch has a hard strap which irritates the patients’ skin when it comes R24 into contact with water under the shower. R25 R26 ‘’The watch was too big: one of my patients has very fragile arms and her blouse R27 couldn’t go over the watch. She didn’t like this at all.’’ R28 R29 ‘’If I would be the designer of the watch I would make it with a normal clock face, R30 because this is more familiar for elderly people - especially demented people.’’ R31 R32 R33 R34
106 ‘’One of our patients thought it was some kind of sports watch. That’s how it looks R1 and so she gave it to her grandchildren. We couldn’t find the watch for a week or so.’’ R2 R3 In the case of one patient they changed the strap of the watch to an ‘irremovable’ R4 strap because the patient kept removing her watch during the night. This intervention R5 did not help because she figured out how she could open the new strap as well. R6 R7 The observation showed us that the actual computer system for generating the data R8 appeared to be easy to read and interpret for the caregivers. A screenshot of this R9 computer system can be seen in figure 2, with a zoom-in of the activity curves in the R10 computer system in figure 3. Figure 2 shows the screen the caregivers start from, for R11 printing out the monitoring data, figure 3 shows the specific data of a patient for one R12 week, where the part which is the horizontal stripes under the line is sleeping and 4 R13 the part with the peaks signifies being awake. R14 R15 R16 R17 R18 R19 R20 R21 R22 R23 R24 R25 R26 R27 R28 Figure 2 Start-screen of the computer system from the IST Vivago watch R29 R30 R31 R32 R33 R34
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R1 R2 R3 R4 R5 R6 R7 R8 R9 R10 R11 R12 R13 R14 R15 R16 R17 Figure 3 Activity curves screen (zoom-in screen) of a computer system from the IST Vivago watch R18 R19 R20 In the interviews the caregivers indicated that in the case of another patient, they R21 could not believe that she really did not sleep at all during the night. The caregivers R22 therefore used a video camera one night to monitor, whether the patient indeed R23 did not sleep at all. The watch was proved right because the videotape also showed R24 that the patient was not sleeping. The family members of the patient gave consent R25 for this. R26 R27 In the interviews, several caregivers mentioned the absence of a good environment R28 for printing out the data. All in all, the computer system itself was good, but the R29 infrastructure was not good, because the system to print out the data or see the data R30 was located downstairs, not at the same level as the department where the patients R31 were wearing the watch. R32 R33 R34
108 interventions R1 Caregivers could see from the monitoring data that a patient was not sleeping very R2 well. In the multidisciplinary meetings which were specially arranged for the watch R3 between two caregivers, a doctor, a psychologist and the project manager, several R4 interventions were discussed. In some cases the caregivers asked the patient’s family R5 members about specific details, for example about their normal sleeping position R6 when they were still living at home. R7 R8 If the interventions were approved at the multidisciplinary meeting then the caregivers R9 started the intervention. They also monitored whether the intervention appeared to R10 be successful due to a longer sleeping time, fewer sleep periods, and an improved R11 circadian rhythm. The diary and interviews showed us that the interventions the R12 caregivers used can be divided into four categories; sleep interventions (change sleep 4 R13 position), quality of life (teddy bear, entertainment by playing a billiard game, taking R14 a bath before going to bed), medication (changing the time of the medication or R15 changing the sort of medication), and no intervention. This categorization was made R16 by the researchers according to the activity carried out during the intervention. The R17 interventions were done intuitively, based on the outcomes of the watch and were R18 not carried out systematically. The caregivers came up with something which they R19 thought might be helpful, for example giving a teddy bear to a person who slept R20 badly because of anxiety, or giving someone a bath to relax them a little more. R21 R22 effects of the interventions on sleeping behaviour R23 Concluding from analyzing the data, the mean sleeping time during the project R24 of 3 months (November 2008 till February 2009) was 389 minutes (= 6.5 hours), R25 the sleeping periods were 5.66 and the circadian rhythm was 0.546 (the lower R26 the better). For the one-time only interventions we compared the mean with the R27 night results from the night after the intervention. For example, did someone have R28 a better sleep time in the night after taking a bath? These results were compared R29 with the standard deviation for that patient to see if the results were more than a R30 normal change like everyone has in their sleep pattern. During the data analysis, R31 and in combination with the one-time interventions mentioned inthe diary and the R32 R33 R34
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R1 interviews, there could be concluded that 3 out of the 5 interventions resulted in an R2 improved sleep time, 2 out of 5 interventions for improved sleeping periods and 3 R3 out of 5 for improved circadian rhythm. R4 These results should be interpreted with caution. Only one (1) positive change in R5 sleep time (someone who slept more minutes than before) and 1 negative change in R6 sleep periods (someone who slept for more periods and, because of that, had more R7 periods of being awake) came above or under the level of the standard deviation. R8 R9 As mentioned in the method section, there was one structural intervention. In R10 this structural intervention they changed the time of a person getting his sleeping R11 through medication, in the new situation they gave it at 9 pm, the same time as R12 they gave the person the sleeping medication. A t-test was used to compare the R13 means before and after a specific structural intervention to conclude whether there R14 were any significant differences in sleep-period, sleep time, and circadian rhythm. R15 The time before the intervention was 74 days and the time after the intervention 18 R16 days. For the t-test a significant difference was found in the sleep time, the minutes R17 have changed from 332 minutes of sleep to 434 minutes of sleep (p=0,024). R18 R19 In figure 4 you can see the data of a patient who get her sleeping-in medication at R20 9 pm and her sleeping-on medication around midnight, during that period she was R21 awake for several hours as can be seen by the peaks. In figure 5 they changed her R22 sleeping-on medication time from midnight to 9pm and you can see she has longer R23 periods of sleep (horizontal stripes) R24 R25 R26 R27 R28 R29 R30 R31 R32 R33 R34
110 R1 R2 R3 R4 R5 R6 R7 R8 R9 R10 R11 R12 R13 Figure 4 Activity curves before the change of medication time 4 R14 R15 R16 R17 R18 R19 R20 R21 R22 R23 R24 R25 R26 R27
Figure 5 Activity curves after the change of medication time R28 R29 R30 R31 R32 R33 R34
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R1 effects of interventions on the care delivery process R2 In the interviews, the caregivers mentioned that - thanks to the Vivago watch - it had R3 become easier to coordinate care during the day and the night. The coordination of R4 care can be divided up into various categories. First of all, there is the coordination R5 of sleep, for example in the morning they could see if someone had slept very badly R6 during the night and so decided to let that person sleep a bit longer, to make sure he R7 or she would at least have a couple of hours sleep. The next one involves coordinating R8 the sleep medication: with the data compiled by the watch they could examine the R9 sleeping behaviour of a specific patient. If the data show that a person wakes up and R10 stays awake while getting his sleep on medication, the time of this medication could R11 be changed or even the doses of the medication changed. The last possibility is the R12 coordination of work activities for the caregivers. In the morning the caregivers used R13 the data to decide which persons they would start washing and getting dressed. The R14 same could be done in the evening. R15 R16 discussion R17 R18 Prior work has documented the positive effects of the use of technology in dementia R19 care. Technology can be supportive for the patient’s family and professional caregivers R20 and improve the quality of life of patients themselves (8-13, 26-29). R21 R22 A mixed method design was used to see how the IST Vivago watch, which measures R23 the sleep and wake pattern, was used for people with severe dementia in a nursing R24 home. Generally speaking the interventions based on the watch showed positive R25 results in the sleep time period and circadian rhythm for the dementia patients. R26 The results were preliminary for a small group of patients, but indeed positive. The R27 caregivers give several implications for the improvement of the care delivery process, R28 for example using the watch during night shift. They found in the watch an extra R29 sensory organ. The infrastructure of the computer system for monitoring the data R30 and the functionalities of the watch itself could be further improved. R31 R32 R33 R34
112 These first results seem to be positive, but there should have been more of a focus R1 on the process of the total implementation of technology in healthcare. There should R2 have been a match between organization, users and technology as mentioned in R3 several articles in the introduction of this article (14, 16, 18-21). In this section an R4 explanation will be given of the important missing or fulfilled conditional criteria for R5 the diffusion of the technology, in this case the watch in this nursing home. R6 R7 First of all relative advantage is very important. The advantages became clear in R8 this small research study; with just a few interventions they already saw preliminary R9 positive results in the sleeping behaviour of patients. The caregivers mentioned R10 several implications for an even better coordination of care with the watch. For R11 example, using the watch during the night shift to see if someone is really asleep and R12 to carry out surveillance rounds and security checks during the night according to the 4 R13 data compiled by the watch. R14 R15 The trialability before really starting to use the watch was not done properly during R16 this study. The caregivers were told to start using the watch, but there was no time R17 for trialability and deciding how to use the watch. R18 R19 In the way of observability the caregivers started using the watch themselves to let R20 the patients get used to the watch as well, which is a good method. It is necessary R21 to share the different kind of interventions with all the caregivers working with the R22 watch. In this project, the different caregivers did not even know from each other R23 which interventions they used and which had an effect. R24 R25 With this, the communication channels about the use of the watch and especially R26 about the interventions which have been done could be improved. The interventions R27 were discussed in the multidisciplinary meetings, but not all the caregivers joined R28 this meeting. The communication channels at the start of the project for introducing R29 the whole project could be improved for the caregivers. In this project, the duration R30 and exact timing of the introduction was far from ideal. The introduction for family R31 members which took place during an evening especially reserved for this purpose R32 was fine. R33 R34
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R1 To bring about the widespread use of the watch, involve the other departments that R2 also have patients with dementia; this is homophilousa group, which makes it easier R3 to disseminate the advantages for this group. Later on in the project you could decide R4 to include different kinds of elderly patients, for example. R5 R6 In relation to the pace of innovation in this project, it became clear that reinventing R7 the watch in specific ways would help to encourage its widespread use. Caregivers R8 mentioned that the watch was too big, that it looked like a sports watch and that it R9 did not have an analog clock. For patients themselves, some changes would make R10 the watch more user-friendly, but the caregivers will also feel that they have some R11 influence on the watch if something is done with their suggestions as well. R12 R13 An innovation gets shaped into norms, roles and a social network which exists in R14 the social care setting. For example, in this project they already started printing out R15 the data for the patient’s existing healthcare records. They should use regular team R16 meetings more for a discussion about the watch and the possible interventions. R17 R18 One thing they did well in this project was using two interested caregivers as opinion R19 leaders. If the watch has to be used in different departments of the social care setting R20 then the use of opinion leaders can be very effective. R21 R22 The caregivers mentioned the fact ofcompatibility. They mentioned that it would be R23 great to let the watch give out an alarm too if a patient is getting into the lift, which R24 goes to another department of the nursing home, which is not allowed. R25 R26 One of the main drawbacks in this project was the lack of a good infrastructure. R27 Caregivers had to go downstairs to print out the monitoring data. As an organization R28 starts to work with technology one of the primary things that should be done is to R29 make sure that the required infrastructure is well organized. For caregivers, using any R30 kind of technology is already new to them; it is therefore important that using it does R31 not require a lot of extra effort. R32 R33 R34
114 The above-mentioned criteria are conditionally for the diffusion of an innovation, R1 but next to that the whole process of implementation and the match between R2 technology, organization and users is important. The problems which occurred R3 during the project are the result of a strategy that was too technology-driven. They R4 could use the holistic framework of Van Gemert et al. (17, 20), where the whole R5 process of starting to use technology in a healthcare setting starts with involving the R6 stakeholders during the implementation process and involving them in redesigning R7 technology for their end-users (17, 20). The chosen technology needs to fit with its R8 users and the context of usage. In this specific study they should start looking into R9 the needs of the nursing home as they relate to the sleep/awake rhythm, see what R10 the watch can do to address these needs and how, create the right facilities and R11 infrastructure for using the watch, start doing something with the recommendations R12 that caregivers give about the watch and, most of all, make sure that the watch and 4 R13 all interventions related to the watch will be tabled on the agenda, and discuss the R14 effects of the watch and the patients for whom the watch is working for. R15 R16 More interventions could have been done if the project had not been technology- R17 driven, but focused more on organizational improvements. In the interviews, the R18 caregivers stated that they conducted fewer patrols during the night because they R19 could see which patient was awake and which patient was asleep. The passage R20 ways in the nursing home are pretty long, around 80 metres, so it saves a lot of time R21 if you do not have to walk the entire length of the passage way just to conclude R22 that someone is sleeping normally and then have to walk all the way back to the R23 office. The spare time gained could be used for a lot of other activities, for example R24 preparing the medicines for the next morning or doing administrative work. Patients R25 do not have to be waken up by opening the door of their room; instead you can R26 see if they are still asleep on the computer. Even in the morning shifts, the Vivago R27 watches helped to save time because the caregivers could immediately see who was R28 awake and who could be helped to get washed and dressed. Some caregivers also R29 mentioned the fact that the watch could help patients be less frustrated during the R30 day which would make them more cooperative with the care workers. This would R31 also save a lot of work because patients with this condition tend to require a lot of R32 R33 R34
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R1 time and effort. If there would be a greater focus on these needs, the technology R2 would become needs-driven instead of technology-driven. R3 R4 There are some limitations to this study. It should be noted that the quantitative data R5 analysis and specifically the comparisons between monitoring data before and after R6 one intervention is preliminary, yet despite this, the results showed improvements R7 in the sleep/wake pattern. It is evident together with the qualitative results that the R8 watch might have positive results. R9 The role of the patient with dementia is minimal in this research; the focus was on the R10 professional caregivers and the data analysis. A study by Topo (2009) also describes R11 the difference between studies with caregivers or people with dementia. Caregivers R12 have a tendency to emphasize care issues such as the management of instrumental R13 activities of daily living (IADL), activities of daily living (ADL) and safety issues. People R14 with dementia report more often on how difficult it is to find something to do, to R15 sleep or to live with the insecurity that you do not know where you are or what R16 year it is. Consequently, there is a marked difference in the needs of people with R17 dementia themselves and the interests of the family members who provide care R18 or the professional caregivers. In this study, patients were not asked themselves R19 about their occasional poor sleep/wake rhythm. It is a challenge to ask people with R20 dementia who are living in a nursing home questions about passive technology. R21 Although it might be a challenge the best way of using a technology in healthcare is R22 to start with this contextual inquiry, as mentioned before in the holistic framework R23 (20). R24 R25 No control group or pre-test was used in this research. The reasons for this were that R26 people with dementia are not comparable in an intervention and control group (the R27 size of the project group was too small to carry out a random comparison between R28 a control and an intervention) and people with dementia have a progressive disease R29 and using a pre-test for this might influence the results because a patient’s health R30 might decline. R31 R32 R33 R34
116 The potential bias in the qualitative research approach was overcome by relating the R1 quantitative data to the interviews, the diary and the observations. Evidence from R2 different sources was used to confirm the same fact or finding. R3 R4 acknowledgments R5 I would like to convey my thanks to Limez for the project organization, the nursing R6 home Diafaan, and van Dorp Installations which coordinated this project and made it R7 possible for me to conduct my research. R8 R9 R10 R11 R12 4 R13 R14 R15 R16 R17 R18 R19 R20 R21 R22 R23 R24 R25 R26 R27 R28 R29 R30 R31 R32 R33 R34
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R1 references R2 R3 1. Wimo A, Prince M. World Alzheimer Report London: Alzheimer’s Disease International, 2010. R4 2. Ancoli-Israel S. Sleep disturbances among patients with dementia. A Clinical Journal of R5 the American Geriatric Society. 2005;12(12):13-4. 3. Middelkoop HAM, Kerkhof GA, Smilde-van den Doel DA, Ligthart GJ, Kamphuisen R6 HAC. Sleep and ageing: The effect of institutionalization on subjective and objective characteristics of sleep. Age and Ageing. 1994;23(5):411-7. R7 4. Better Health Channel. Dementia and sleeping problems. Melbourne: Better Health R8 Channel; 2009 [updated 2009,November; cited 2010 August 10]; Available from: http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Dementia_and_ R9 sleeping_problems?open. R10 5. Brassington GS, King AC, Bliwise DL. Sleep problems as a risk factor for falls in a sample of community-dwelling adults aged 64-99 years. Journal of the American Geriatric R11 Society. 2000;48(10):1234-40. R12 6. Foley DJ, Monjan AA, Brown SL, Simonsick EM, Wallace RB, Blazer DG. Sleep complaints among elderly persons: an epidemiologic study of three communities. R13 Sleep. 1995;18(6):425-32. 7. Sommeren EJW, van. Circadian and sleep disturbances in the elderly. Experimental R14 Gerontology. 2000;35(9-10):1229-123. R15 8. Topo P. Technology studies to meet the needs of people with dementia and their caregivers.A literature review. Journal of Applied Gerontology. 2009;28(1):5-37. R16 9. Lauriks S, Reinersmann A, van der Roest HG, Meiland FJ, Davies RJ, Moelaert F, R17 Mulvenna MD, Nugent CD, Dröes RM. Review of ICT based services for identified unmet needs in people with dementia. Aging Research Reviews. 2007;6:223-46. R18 10. Nijhof N, Gemert-Pijnen JEWC, van, Dohmen D, Seydel ER. Een studie naar toepassingen R19 van techniek in de zorg voor mensen met dementie en hun mantelzorgers. Tijdschrift voor Gerontologie en Geriatrie. 2009;40(3):113-32. R20 11. Cahill S, Macijauskiene J, Nygard AM, Faulkner JP, Hagen I. Technology in dementia R21 care. Technology and Disability. 2007;19(2-3):55-60. 12. Duff P, Dolphin C. Cost-benefit analysis of assisitive technology to support independence R22 for people with dementia - Part 2: Results from employing the ENABLE cost- benefit model in practice. Technology and Disability. 2007;19(2-3):79-90. R23 13. Cahill S, Begley E, Faulkner JP, Hagen I. ‘’It gives me a sense of independence’’- R24 Findings from Ireland on the use and usefulness of assistive technology for people with dementia. Technology and Disability. 2007;19(2-3):133-42. R25 14. WHO. Medical devices: managing the mismatch. Geneva, Switzerland: World Health R26 Organization, 2010. 15. Atienza AA, Hesse BW, Gustafson DH, Croyle RT. E-Health research and patientcentered R27 care examining theory, methods, and application. American Journal of Preventive R28 Medicine. 2010;38(1):85-8. 16. Black AD, Car J, Pagliari C, Anandan C, Cresswell K, Bokun T, McKinstry B, Procter R, R29 Majeed A, Sheikh A. The impact of eHealth on the quality and safety of health care: a R30 systematic overview. PLoS Medicine. 2011;8(1):1-16. 17. Van Gemert-Pijnen JEWC, Nijland N, Ossebaard HC, van Limburg AH, Kelders SM, R31 Eysenbach G, Seydel ER. A holistic framework to improve the uptake and impact of eHealth technologies. Journal of Medical Internet Research. 2011;13(4):e111. R32 R33 R34
118 18. Yusof MM, Kuljis J, Papazafeiropoulou A, Stergioulas LK. A evaluation framework for health information systems: human, organization and technology-fit factors (HOT-fit). R1 Journal of Medical Informatics. 2008;77(6):386-98. R2 19. Resnicow K, Strecher V, Couper M, Chua H, Little R, Nair V, Polk TA, Atienza AA. Methodologic and design issues in patient centered eHealth research. American R3 Journal of Preventive Medicine. 2010;38(1):98-102. R4 20. Nijland N. Grounding eHealth. Towards a holistic framework for sustainable eHealth technologies [Dissertation]. Enschede, the Netherlands: University of Twente; 2011. R5 21. Cain M, Mittman R. Diffusion of Innovation in Health Care. Oakland: California Health R6 Foundation, 2002. 22. Lotjonen J, Korhonen I, Hirvonen K, Eskelinen S, Myllymaki M, Partinen M. Automatic R7 Slaap-Wake and Nap Analysis with a new wrist worn online activity monitoring device vivago wrist care. Sleep. 2003;26(1):86-90. R8 23. Lamminmaki E, Saarinen A, Lotjonen J, Partinen M, Korhonen I. Differences in light R9 sleep and deep sleep measured with IST Vivago wristcare. The 3rd European Medical and Biological Enigineering Conference; 2005, November 20-25; Prague, Czech R10 Republic2005. p. 1727-983. R11 24. Paavilainen P, Korhonen I, Lotjonen J, Cluitmans L, Jylha M, Sarela A, Partinen M. Circadian activity rhtym in demented and non demented nursing home residents R12 measured by telemetric actigraphy. Journal of Sleep research. 2004;14(1):61-8. R13 25. IST Vivago. Application guide activity curve. Helsinki, Finland: IST Vivago,2005. 4 26. Miskelly F. Electronic tracking of patients with dementia and wandering using mobile R14 phone technology. Age and ageing. 2005;34(5):497-518. 27. Miskelly F. A novel system of electronic tagging in patients with dementia and R15 wandering. Age and ageing. 2004;33(3):304-6. R16 28. Lee JH, Kim JH, Jhoo JH, Lee KU, Kim KW, Lee DY, Woo JI. A telemedicine system as a care modality for dementia patients in Korea. Alzheimer Disease & Associated R17 Disorders. 2000;14(2):94-101. R18 29. Nijhof N, Gemert-Pijnen JEWC, van, Seydel ER. Technical support at home for people with dementia. Evaluation report. Enschede, Netherlands: University of Twente,2011. R19 R20 R21 R22 R23 R24 R25 R26 R27 R28 R29 R30 R31 R32 R33 R34
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chapter 5
social contact technology at home: a personal assistant for dementia to stay at home safe at reduced cost
Chapter 5 is based on: Nijhof N, van Gemert-Pijnen JEWC, Burns CM, Seydel, ER. A personal assistant for dementia to stay at home safe at reduced cost. Gerontechnology. 2013; 11 (3):469- 479. doi :10.4017/ gt.2013.11.3.005.00 Chapter 5
R1 abstract R2 R3 Purpose: This paper presents the results of an evaluation of the commercially-available R4 PAL4-dementia system, a supportive touch screen for people with dementia. The R5 main purpose was to study the advantages and disadvantages of the system from R6 the perspective of the client, family and professional caregiver and the potentials to R7 upscale its use. R8 R9 Method: The evaluation was conducted over 9 months with 16 clients of two R10 healthcare organizations in the Netherlands. A mixed-method design was used in R11 this pilot, involving log files of system use, interviews with family caregivers, a focus R12 group made up of professional caregivers, observations of project group meetings R13 and a cost analysis. R14 R15 Results: Clients and family caregivers reported good support of daily life activities. R16 They thought the system could help the client to live at home for a longer period R17 of time. The cost analysis showed monthly savings per client as compared to living R18 in a nursing home ranging from around €820 (10 clients) to €860 (50 clients). R19 Despite these positive results, numerous problems were detected: (i) interruptions R20 of technology, (ii) insufficient operation knowledge of professional caregivers, (iii) R21 insufficient active involvement of family caregivers, and (iv) limited user-friendliness R22 of the lay-out. R23 R24 R25 R26 R27 R28 R29 R30 R31 R32 R33 R34
122 introduction R1 R2 The use of eHealth for people with dementia has received substantial attention in R3 recent years due to the rapid rise in the number of people with dementia and the R4 challenges of developing technology to support clients with dementia. Worldwide, R5 an estimated 35.6 million people suffered from dementia in 2010, with this figure R6 expected to rise by 115.4 million by 2050. In 2010, the global costs attributed to R7 dementia were 604 billion US dollars (1). A change in the care for people with R8 dementia is clearly necessary in order to control costs and to improve quality of care. R9 R10 technology and dementia research R11 Technology applied effectively can allow people with dementia to live at home longer, R12 resulting in improved quality of life, social interaction and significant cost-savings (2- R13 7). Nijhof et al. (2) conducted a literature review to investigate how different kinds R14 of technology can support dementia care most effectively. Monitoring and signalling R15 technology appeared more suitable for people in a severe stage of dementia and 5 R16 provides a feeling of safety, both for them and their families. Social contact technology R17 is most useful when it is used for people in the early stages of dementia and can be R18 used to improve their quality of life(2). Technology can help clients stay at home R19 longer which is often a more cost effective and convenient option than admission R20 into a nursing home (3). R21 R22 Research on the application of social contact technology has shown that it is engaging R23 and enjoyable for people with dementia and caregivers, and may encourage people R24 with dementia to remain actively engaged and participating in their normal lives with R25 friends and family (4, 5). Furthermore, social contact technology might also increase R26 the caregiver’s enjoyment of the interaction (4, 5), which could also improve the R27 quantity and quality of social interaction. In terms of other features, one study, that R28 of Meiland et al (6), found that useful functionalities for people with dementia for a R29 touch screen interface included the capability to set reminders, the ability to navigate R30 a phone directory by photographs, support for leisure activities, and safety warnings R31 for when for example the front door was not closed. These findings were based on R32 R33 R34
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R1 literature research, user workshops and user interviews. This touch screen (Cogknow R2 Day Navigator, CDN) was developed and the evaluation showed that people with R3 dementia themselves and caregivers valued the CDN as user-friendly and useful. The R4 mobile device of the CDN was also valued positively. The system had no effect on the R5 autonomy of the person with dementia or the burden of the caregiver, but this could R6 be, because of the short testing period (8). The follow up project of the CDN is called R7 Rosetta, whereby the same touch screen is used, but linked with different sensors R8 (so if someone is not cooking, they get a reminder), sensors to register daily patterns R9 and an alarm detection system. The first preliminary results look promising as well, R10 especially for the caregivers to create a feeling of safety and get more insight in the R11 life of the people with dementia (9). R12 R13 Generally, there is a lack of scientific evidence about the overall impact of eHealth in R14 healthcare in general (10-12) and it is in this context that the present research was R15 conducted. R16 R17 aim of the study R18 This paper presents the results of an evaluation of one care technology, the R19 commercially-available PAL4-dementia system (PAL4 BV, Driebergen-Rijsenburg, The R20 Netherlands). Its main purpose is to investigate the advantages and disadvantages R21 experienced by clients and caregivers and to identify possible improvements. Insights R22 from the study of this system have implications for eHealth home care systems in R23 general, because of the similarities in implementing an eHealth technology. R24 R25 The following research questions were asked: R26 • Which activities are undertaken for introduction of the system? R27 • What uptake has this system in relation to usage and usability? R28 • What impact has the system upon health care delivery, well being and R29 cost savings? R30 R31 R32 R33 R34
124 methodology R1 To address these questions we used a mixed method design to gain a rich picture R2 of the effectiveness of the system. For the evaluation of an eHealth application a R3 mixed-method approach is often the best option, since it combines both qualitative R4 methods and quantitative methods (13-17). The data from the different sources can R5 complement one another to provide a broader view (17). For example details about R6 the results of usage log files can be asked during in-depth interviews. To answer R7 the questions, the usage log files, interviews with family caregivers, a focus group R8 made up of professional caregivers and observations of the project group meetings R9 have been used. To assess cost savings, we carried out a quantitative cost analysis R10 comparing the costs of living at home and using the system with the costs of living R11 in a nursing home. R12 R13 theoretical framework R14 The successful development and deployment of eHealth technologies requires a R15 rich and multi-faceted approach to the design and evaluation of these technologies. 5 R16 In particular, Gemert et al. (18) have proposed the CeHReS roadmap as a holistic R17 approach for the research and development of eHealth technology moving from R18 contextual inquiry, value specification, design, operationalization to summative R19 evaluation. The main topics measured for uptake are: usage behaviour and usability. R20 Impact in this study is related to the influences of the system on healthcare delivery, R21 well being and how it affects the costs. The well being measured in this study is R22 perceived well being. For the clients’ well being subjects related to leisure, doing R23 things independently and staying home for a longer period of time were asked. The R24 well being of the family caregiver was measured by support and reduce from burden R25 of care. For health care delivery we looked into detail about the way professional R26 caregivers used the system, as related to the impact on their work process. The cost R27 savings were measured by comparing the costs of technology and homecare with R28 staying in a nursing home (on a monthly basis). R29 R30 Since PAL4-dementia was already an operational system, a summative evaluation R31 was conducted. This means that the evaluation could only be started from the R32 point of introducing the system to the client, implementation, and subsequently, R33 R34
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R1 through to the operation and maintenance of the system. Since the introduction and R2 implementation of such a system has a strong effect on its impact (19), these phases R3 are of particular interest. In addition the usability results will be used to optimize the R4 system to users’ needs. R5 R6 describing Pal4-dementia R7 The system is used as a supportive and social contact technology (2), and provides R8 daily organizer functions, specific ‘PAL4 features’, and video contact with caregivers R9 or family. It can be obtained as a general assistant for healthy elderly clients, or as R10 a specific one, such as the PAL4-dementia used in this study. The features used in R11 PAL4-dementia were chosen and decided by several experts in the field of dementia R12 care: a specialist elderly care medicine and two homecare nurses with expertise in R13 caring of people with dementia (20). The features were built by PAL4 BV employees. R14 R15 The basic system has been sold in the Netherlands to approximately 1000 older R16 adults, while the dementia version is currently in use by around 50 people (21). R17 In the dementia version, a touch screen is used which shows people an agenda of R18 their day, a diary, a life album and a ‘PAL4 button’. Pressing the PAL4 button opens R19 a menu with memory games to play, information about dementia, and information R20 for the client about their own village, in which they live. The system also provides R21 two-way video contact with family or professional caregivers. PAL4-dementia was R22 specially designed to be less complicated and easier to learn than the system for R23 healthy older adults. Its purpose is daily use to improve the well being of clients by R24 doing daily activities independently, improving the well being of family caregivers by R25 supporting them in their care to create less burden, and with this all, let people with R26 dementia live at home for a longer period of time. R27 R28 The interactive touch screen consists out of a touch screen and so called Bidi box, R29 which is a little box creating the secured two way video connection. The touch screen R30 first shows the start-up screen (Figure 1a). The first line of text is used for entering R31 the program (PAL4 button), the second line is used for making video contact with a R32 professional caregiver, the third line is used for video contact with a family caregiver, R33 and the last line is used for television. This PAL4 TV button may access live television R34
126 broadcasts, for example a church service that people can watch live. This feature was R1 not assessed in this study. Touching the PAL4 button, the PAL4 Dementia features R2 become available. It shows the agenda, life album, diary and PAL4 (Figure 1b). R3 R4 The button agenda (Figure 1c) shows all the appointments till 15:00H, after 15:00H R5 the screen will refresh itself and show the appointments after 15:00H. In the agenda R6 can be seen a pictogram of the activity, an analogue clock of the start and end time R7 of the activity, and a personal message. On the side, the actual time, day, date and R8 season (with a pictogram) can be seen. R9 R10 The life album (Figure 1d) has four options: watching pictures, reading your personal R11 history story, watching movies and listening music. R12 R13 The diary (Figure 1e) itself can be used for writing the diary or reading the diary. R14 Persons with dementia, family caregivers and professional caregivers are allowed to R15 write and read in this diary. 5 R16 R17 Touching the last button, PAL4 (Figure 1f), reveals information about their own village, R18 health and housekeeping, shopping (online shopping features), leisure (for example R19 playing memory games), and family and contact (watching movies from other PAL4 R20 members or meal preparation videos). R21 R22 On the family caregiver website caregivers can enter appointments in the agenda, R23 create a personal history story, upload pictures in the life album or read and write R24 in the diary. The website can be reached from a family caregivers’ own computer R25 by internet through a specific password. There is no limit of the number of family R26 caregivers who can connect. The touch screen itself also offers the option to access R27 this website, a feature developed because several clients had a family caregiver who R28 was a partner living in the same house and did not have a computer. The website R29 for the family caregivers has been made in the same easy-to-use style as PAL4 itself R30 because family caregivers generally tend to be seniors, with less experience with R31 computers. R32 R33 R34
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R1 R2 R3 R4 R5 R6 R7 R8 R9 R10 R11 R12 R13 R14 R15 R16 R17 R18 R19 R20 R21 R22 R23 R24 R25 R26 R27 R28 R29 R30 R31 R32 R33 R34
128 R1 R2 R3 R4 R5 R6 R7 R8 R9 R10 R11 R12 R13 R14 R15 5 R16 R17 R18 R19 R20 R21 R22 R23 R24 R25 R26 R27 R28 R29 R30 R31 Figure 1 Client’s interface; A: Opening screen; B: PAL4-dementia program, C: Agenda; D: Life album; E; Diary F: General program R32 R33 R34
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R1 To install the system, a basic internet connection (512 kb/up) is necessary. If people R2 did not have this connection the healthcare organization would pay for its installation R3 and use. The system itself was paid for by the healthcare organization with financial R4 aid from the Dutch Healthcare Authority (supervisory body for all the healthcare R5 markets in the Netherlands). R6 R7 installation of the system R8 The PAL4-dementia system was installed by a technician who made an appointment R9 by phone and on a specific date and time went over to the clients’ house. The R10 procedure took around three hours and included the explanation of how the system R11 works. The technician would leave a paper manual at the person’s home; a short R12 manual with the four buttons, the description of what was behind these buttons, R13 and a more extensive manual with all the information people could find behind the R14 buttons. One or two days after the installation an occupational therapist would come R15 by to further explain the system and help the client work it in daily life. For questions R16 or interruption of service, people were able to phone to or video contact with the R17 service desk of the company, only open during office hours. If an interruption of R18 service occurred, the technician would log into the system and first try to resolve the R19 problem online. If this did not work (s)he had to visit the client to solve the problem. R20 R21 study participants R22 Two homecare organizations participated in this study that had not used the PAL4 R23 dementia system before. R24 R25 The project group consisted of 11 members (9 females, 2 males): two specialists R26 elderly care medicine, five nurses, two project managers, one occupational therapist R27 and the first author. None of them had prior experience with using touch screens R28 for people with dementia. The members consented to observation during their R29 meetings. R30 R31 R32 R33 R34
130 The clients for this study were selected by professional caregivers of the participating R1 homecare organizations. To be included in the study a client: R2 • had been diagnosed with dementia or had shown signs of being more R3 forgetful than most people their age, R4 • was likely able to continue to live at home for at least 9 more months, R5 • needed care from one of the participating homecare organization, R6 • spoke and read Dutch, and R7 • was considered capable of using the system. R8 Clients with other cognitive disabilities, for example Parkinson’s disease, were R9 excluded. In total 16 clients participated, eight from each homecare organization. R10 Informed consent was signed by the client or responsible relatives to allow for using R11 the log files of the client. R12 R13 Ten female and six male clients participated. The age from the clients ranged from R14 58 to 86 years, with a mean of 78 years. The Mini Mental State Examination (MMSE) R15 (1= severe dementia and 30=no dementia) (22) ranged from 13 to 29 with a mean of 5 R16 22, with 1 missing score (because the caregivers found testing too upsetting for the R17 client). R18 R19 The family caregivers’ age ranged from 35 to 79, with a mean of 58 years. The R20 relationships between client and family caregiver differed: seven daughters, four R21 sons and five partners. The number of years caring for the client varied from 2 to 12 R22 years, with a mean of 4.5 years. For nine clients there was no other family caregiver. R23 Four family caregivers had a low level education (high school), four had mid level R24 education (college) and nine completed a university education (high level education). R25 R26 Selected clients would be invited, together with their family caregiver, to have the R27 system installed in their home and use it, as well as to be interviewed. R28 R29 After several months of using the system, a focus group was organized by the first R30 author. The main reason for installing this focus group was to gain more insight from R31 the perspective of the professional caregiver in relation to the uptake (usage and R32 R33 R34
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R1 usability) and impact (well being and healthcare delivery). It consisted of two nurses R2 who trained the clients at their home in using the system (from one participating R3 organization), and the project manager and occupational therapist (of the other R4 organization). In age they ranged from 39 to 46 years, with a mean of 44 years. Two R5 members had a mid level education and the other two a high level education. R6 R7 study design R8 A field observation was conducted between August 2008 and December 2010. The R9 first healthcare organization started project-group meetings in the fall of 2008, while R10 the other started at the end of 2009. The actual installation of the system followed a R11 few months later in both cases. The log files were analyzed from the first nine months R12 of a person using the system. The interviews and focus group meetings took place at R13 the end of 2010. The clients started to use the system at different times. This is the R14 reason for the broad range of time for collecting data. R15 R16 data collection R17 Project group meetings R18 In total, 24 project group meetings were held, ranging from approximately one to R19 two hours in length. These project groups gave insight in the introduction, the uptake R20 and impact of the system. The first author made reports of these meetings. At the R21 start of the projects these meetings were about introduction issues (how to start up R22 the project, who should be involved, how to recruit clients), later on the subjects R23 changed to actual experiences and problems with using the system. R24 R25 Log files R26 For each client the log files of system use were collected for the first nine months of R27 use. It showed the total number of clicks a client made at each level of the system. R28 The following limitation became obvious: to use a game a client had to click on three R29 buttons in succession: PAL4, shopping and leisure, games, before s/he could select R30 the specific game to play. R31 To answer the question related to usage the focus was on the total usage of the R32 different features, the period of time of use and the amount of use. R33 R34
132 Interviewing family caregivers R1 In each case family caregivers were interviewed by the end of this study to answer R2 questions related to introduction, uptake (usage and usability) and impact (well being R3 and healthcare delivery). Sometimes the client present during these interviews made R4 some comments as well. These comments have been included in the transcripts. R5 Questioning the clients with dementia alone about the system was not considered a R6 valid option for data collection because of their cognitive impairment. R7 R8 Focus group of professionals R9 The focus group meeting took about 90 minutes, and consisted of a structured set of R10 topics related to the research questions, whereby the researcher had the function of R11 moderator. The focus group comments were summarized by the moderator. R12 R13 Cost analysis R14 One of the main purposes of this study was to get more insight in the direct cost of R15 living at home with the system in comparison to living in a nursing home (impact 5 R16 related to cost). All costs related were collected in euro. R17 • Living in a nursing home (in the Netherlands there is a legally fixed price R18 for the expenses of a person with dementia living in a nursing home); R19 • Touch screen and installation; R20 • Subscription for the use of the system and internet connection R21 • Homecare for the clients R22 • Monthly fee for services, such as trouble shooting R23 • Monthly expenses for the professional caregivers to use the system, R24 including house visits and video contact (number of hours per month R25 multiplied by the wages of the caregivers) R26 R27 R28 R29 R30 R31 R32 R33 R34
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R1 Data analysis R2 Overall the interviews, focus group and project group meetings were used to answer R3 the questions related to uptake (usage and usability) and impact (well being and R4 healthcare delivery). The log files were used to gain insight in the usage of the system. R5 As last the cost analysis was used to answer the question related to the impact and R6 specifically the cost aspect. R7 R8 The interviews with the family caregivers were coded in a coding scheme related to R9 the full range of research questions; usage, usability, healthcare delivery and well R10 being. The transcripts were read by the first author several times to capture the R11 experiences of the family caregivers, and to aid in the development of the coding R12 scheme. A research assistant also coded the interviews to overcome potential R13 researcher related bias and improve reliability. The focus groups with the professional R14 caregivers and the project group meeting reports were coded in the same coding R15 scheme. Again, the transcripts were read several times in their entirety to capture R16 the experiences of the caregivers to aid in identifying the coding scheme. R17 R18 In total there were 7 complete 9-months log files and 7 incomplete files. Five persons R19 used the system for eight months, one person for four months and one person for R20 three months. For one person the log files were missing, because the person quit R21 earlier in the project and the log files were not saved due to regular clean up actions R22 by PAL4 employees. For another person there were no log files, because the PAL4 R23 system was not used by the client and picked up after about three weeks. Therefore R24 only 119 months of logs of using the system became available for analysis. R25 R26 Overall the log files were used to get insight in the general moments and feature. R27 The first analysis consisted of sorting the number of button presses in the morning R28 (6:00-12:00H), afternoon (12:00-18:00H), evening (18:00-24:00H) and night (0:00- R29 6:00H). Second, the number of clicks on the start screen was sorted by the main R30 button pressed. In case of the PAL4 button the underlying buttons were taken into R31 account: shopping/leisure, health/housekeeping, village information and family/ R32 contact, as well as the clicks of family caregivers to fill in the agenda. After these R33 R34
134 general analyses of the logs, the information was split up for every person to see the R1 percentage of days each client used the system and the personal average of the clicks R2 per day on use days. R3 R4 For the cost analysis several calculations were made: R5 • Total governmental or health insurance expenses for someone living at R6 home with the system; R7 • Total governmental or health insurance expenses for someone living in R8 a nursing home; R9 • Comparison between living at home with the system and living in a R10 nursing home (for 10 to 150 clients in steps of 10 clients; for 1 to 12 R11 months in steps of 1 month; for an increasing amount of home care) R12 R13 results R14 R15 system introduction 5 R16 The interviews, focus group and project group meetings indicated that the way the R17 system was introduced to users needed to be improved in several respects. R18 R19 First, professional caregivers had to recruit the clients, but having no prior experience R20 with the system, they sometimes had problems explaining it in a clear and concise R21 way. Clients could be recruited by other caregivers not in the project group, but R22 because they did not know much about the system, this did not work out well. Even R23 several family caregivers refused to participate, because they did not think their R24 relative would be capable of using the technology. R25 R26 Second, it was not helpful that the members of the project group changed several R27 times due to sickness, retirement and lack of time. The purpose and working of the R28 technology had to be explained repeatedly. R29 R30 Third, some of the family caregivers thought the installation of the system was R31 too late in the process of dementia; it would have been easier if clients had been R32 R33 R34
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R1 recruited earlier in their disease process, when they were more capable of learning R2 new things. On the other hand, it was stated that higher functioning clients did not R3 really need the system yet and might find it stigmatizing. R4 R5 In one of the healthcare organizations, the occupational therapist went on long-term R6 sick leave at the beginning of the project, and training had to wait. This was a big R7 drawback according to the family caregivers, because the system was installed in the R8 home but could not be used. A few clients stated that the training by the technician R9 was too quick. They did not have the time to fully understand the system. R10 R11 Uptake of use R12 The system was used most during the afternoon: 44% (14,722 clicks), 31% in the R13 morning (10,534 clicks), 23% in the evening (7,687 clicks), and only 2% (825 clicks) R14 at night. The ‘’Agenda’’ was used the most (33%) (5215 clicks), followed by the ‘PAL4 R15 button’ (28%) (4245 clicks), and below this button the ‘Shopping and leisure’ (24%) R16 (3680 clicks), then the ‘’Diary’’ (4%) (656 clicks), ‘’Family and Contact’’ (3%) (446 R17 clicks), ‘’Life album’’ (3%) (450 clicks), ‘’Family caregiver page’’ (3%) (414 clicks), R18 ‘’Village information’’ (1%) (147 clicks). The ‘’Health and housekeeping’’ button was R19 used the least (1%) (143 clicks). R20 R21 Usage of the system differed among clients (Table 1). Clients did not use the system R22 every day. System use varied from 9-96% of the days that the system was present in R23 the home. The average was 48% for the total of 14 clients with log files. Because the R24 system was not used every single day we calculated the mean number of clicks on R25 days of use. It ranged from 4.6 to 46.0, with a mean of 20.2 clicks/day of use for the R26 total of 14 clients with log files. R27 R28 R29 R30 R31 R32 R33 R34
136 table 1 System usage by each client-family caregiver combination in relation to client characteristics and ranked by percentage of use days; n.d. = not done R1 Client characteristic System use R2 # Age, MMSE Days % Mean number of R3 Years score installed Use days clicks /Use day Women R4 1 81 30 247 96 46.0 R5 4 78 24 234 82 21.9 R6 5 76 14 228 75 11.1 12 82 18 73 52 45.4 R7 6 86 25 239 46 26.3 R8 9 88 23 262 19 11.5 R9 10 71 26 255 19 11.8 11 88 23 247 19 7.4 R10 13 79 29 263 9 12.4 R11 15 80 n.d. 258 - - Men R12 3 58 23 226 95 9.2 R13 2 83 16 254 93 22.4 R14 7 81 17 215 34 4.6 8 65 22 268 25 32.2 R15 14 84 13 114 10 19.9 5 R16 16 71 25 20 - - R17 Usability R18 Most interviewed people cited electricity costs as a reason for not keeping the system R19 active all day. In almost all clients’ houses, the system was installed at a noticeable, R20 frequently used place, so clients did get a visual reminder to use, but even so, almost R21 half failed to do so regularly. Those people that only started the dementia features R22 when they were actively using the system, decreased its usefulness (according to R23 family caregivers), since reminder ringtones of the agenda did not work. R24 R25 Clients regarded the trouble shooting service as effective. Only one family caregiver R26 mentioned that her relative was so dependent on the system that interruptions of R27 service constituted a big problem since the service desk was only open atoffice R28 hours. In the weekends it could take several days before the service would run again. R29 R30 Almost all clients and family caregivers considered the system useful. 3 out of 16 R31 clients appeared too advanced in the disease of dementia for effective use. In these R32 R33 R34
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R1 cases the relatives stated that the system would have worked when it had come R2 earlier. Other clients, used to their own personal computer, preferred to keeping on R3 using that one. Family caregivers would rather enter appointments into the client’s R4 agenda over the Internet from their own homes, instead of having to go to the R5 clients’ house. R6 R7 Learning to use the system takes time. Some only needed a few learning runs. Most R8 of these clients were familiar with computers. For other clients, less familiar with R9 computers, it could take several weeks before they started to understand the system. R10 None of the clients found using the system intuitive. 5 clients had some fear about R11 breaking the system; several reassurances had to be given by the caregivers that R12 pressing any button could do no harm. R13 R14 Another drawback in usability for clients was the layering of the system, leading to the R15 need to click on a number of buttons in succession. One family caregiver mentioned R16 that her relative could easily find a game on her own computer with icons on the R17 desktop, but failed to do so with the PAL4-dementia system. In addition, games in the R18 system were partly in English instead of Dutch, or in too small print. R19 R20 Computer experience R21 Clients experienced in computer use preferred the mouse over the touch screen. R22 Those wanting to use e-mail through the system requested a separate keyboard R23 instead of the touch keyboard of the PAL4-dementia system. The ringtone for R24 reminders was a source of confusion since it resembled the tone of the telephone. R25 R26 Family caregivers without computer experience found the user-interface easy to use R27 and user friendly. However, family caregivers with computer experience considered R28 the system slow, while making one mistake let you enter everything again, which was R29 annoying. R30 R31 Three of the elderly caregivers without computers of their own mentioned that the R32 clients did not use the system much, but that they themselves did. For example they R33 R34
138 entered their own appointments, because they had to remember both their own R1 and the client’s appointments. They also sometimes enjoyed playing the games for R2 relaxation or looking up information through Google. R3 R4 Service interruptions and confusions R5 Technology interruptions were frequent at the start of the project. Common R6 symptoms: R7 • screen freeze, R8 • poor video contact, R9 • slow operation, R10 • opening a website overlapped the whole screen; the only way to exit R11 was turning the system off, and R12 • when the healthcare centre was busy and could not take a video call, it R13 would call back later without giving the client the option to accept the R14 call. This last problem was solved later in the project. R15 5 R16 The system got a regular update once every few months. With these updates, names R17 and images in the system might change resulting in confusing among the clients. R18 When this update was happening people were asked by the system if the update was R19 ‘’ok’’ and they had to click ‘’yes’’. Those confused, immediately turned off the system. R20 R21 Professional issues R22 The knowledge about the system among professional caregivers in the healthcare R23 organization other than in the project group was limited, especially in the beginning R24 of the project, making recruiting clients harder. The professional caregivers in the R25 project group mentioned that they felt a bit like ‘being alone on the project’. A few R26 months after installation, the homecare nurses who came to the client’s home, got R27 to know the system and turned it on in the morning. A small number of professional R28 caregivers coming into the home of clients wrote in the diary occasionally. R29 R30 The video contact was used rather differently at the two healthcare organizations. At R31 one organization, some house visits were replaced with by video contact. The other R32 R33 R34
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R1 healthcare organization used video contact as something ‘extra’. One of the clients R2 was even given restrictions about the number of times a day he was allowed to video R3 call the caregivers. Several clients also mentioned that making video contact with a R4 general practitioner would be appreciated. R5 R6 Related to the well-being of clients several comments were made by both the clients R7 and their family caregivers. For one healthcare organization, video contact with the R8 family and professional caregivers were both possible; for the other organization R9 only the professional caregivers could be contacted by video. The clients appreciated R10 the option of making video contact with their family caregivers, and found it more R11 convenient and enjoyable than making a phone call. But the option of making video R12 contact with professional caregivers was also judged positively. One of the clients R13 mentioned that she preferred having video contact with a professional caregiver R14 instead of all the different persons coming into her house all the time. R15 R16 Well being R17 For most of the clients, the agenda gave them structure during the day, as they could R18 see the appointments. But for some seeing the day and season of the year was all R19 that was possible, which was also judged positively. Some family caregivers or clients R20 stated that the system had improved the clients’ quality of life. R21 R22 Family caregivers also saw clients laughing when playing a game at the system and R23 mentioned that the clients did enjoy themselves. They were stimulated by the system. R24 R25 Also some of the family caregivers said that the system stimulated clients to do things R26 independently, which could help them to stay in their own home for a longer period R27 of time. They also said that admission to a nursing home is mostly prompted by the R28 increasing burden on the family caregiver or a deteriorating home situation. These R29 factors cannot be changed directly by the PAL4-dementia system. R30 R31 The system did not reduce the burden on the family caregiver, but it does support R32 the lives of clients and indirectly those of caregivers. When family caregivers started R33 R34
140 using the system, they had to put extra time and effort to enter appointments, R1 content etc., but when this had been done, it could save them time. R2 R3 A few caregivers mentioned that they liked the option of making video contact R4 instead of going to the clients’ home all the time. One of the caregivers, a partner, R5 also said she had some more time for herself, as the client could enjoy himself with R6 the system. R7 R8 Financial aspects R9 For the quantitative costs analysis, staying at home with support of the system and R10 staying in a nursing home has been compared in relation to cost. (Table 2). R11 R12 table 2 Direct costs / client for staying one month at home with the system versus staying at a R13 nursing home in the Netherlands (Prices of 2010 are cited); a=Investment R14 at home nursing home R15 Type Cost in euro Type Cost in euro 5 R16 Purchase and installation 2385 a (one time cost) Monthly fee 5413,86 PAL4 per client R17 Monthly fee for service 500 R18 including troubleshooting service (independent from R19 number of clients) R20 Subscription fee per month 50,50 per client with internet costs R21 Average monthly costs for 1958.83 R22 homecare per client R23 Average monthly costs 145.78 professional caregivers for R24 using PAL4 per client R25 Subtotal per client: 4540.11 R26 total: 4540.11 +500 monthly fee total: 5413.86 not related to number of R27 clients R28 R29 For 10 clients living at home with the system one month longer the cost reduction is R30 about €820/client, while a roll out to 50 clients let to a saving of about €860/client R31 (Figure 2). R32 R33 R34
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R1 R2 R3 R4 R5 R6 R7 R8 R9 R10 R11 Figure 2 Cost analysis for living at home with a monthly spending on homecare of €1958 for a roll-out to 10 or 50 clients R12 R13 However, since the quantity of homecare needed is increasing during the course of R14 dementia, there will eventually be a breakeven point at which a nursing home is less R15 expensive. In the Netherlands this point will be reached when the client needs each R16 week 15 hours of homecare, 4 hours of housekeeping service, 3 hours of personal R17 guidance and goes to a day-care centre 20 hours a week; together costing €5000 R18 (calculation was made in 2010). Only when the client could stay home 11 months R19 longer, would the system be cost effective (Figure 3). R20 R21 R22 R23 R24 R25 R26 R27 R28 R29 R30 R31 Figure 3 Cost analysis for living at home with a monthly spending on homecare of €5000 for a roll-out to 10 or 50 clients R32 R33 R34
142 discussion and conclusions R1 R2 Just like similar systems, the PAL4-dementia system has considerable potential to R3 support persons with dementia (2, 4, 5, 7-9, 19, 23-27). The system in our pilot R4 study has three out of the four features needed (6): reminding, picture dialling and R5 support for leisure and pleasure. Only safety warnings are missing, for example when R6 someone leaves the gas stove on. R7 R8 technology generation R9 Technology generation and individual prior experience with computers might explain R10 the large range of usage patterns. Technology generation means that experiences R11 earlier in life with technology (especially till the age of 25) play an important role R12 in using a system. So if a person is into their seventies the technology from around R13 50 years ago plays an important role in how that person deals with technology R14 nowadays (28, 29). Some of our observations correlate with this fact of technology R15 generation. The clients having problems with the usability of PAL4 were of older age, 5 R16 which correlates with the fact that it is harder for this generation to get used to this R17 kind of interface technologies. For family caregivers there was a difference between R18 partners or children, children (younger of age) had less trouble with using PAL4. The R19 professional caregivers using PAL4 differentiated in age, but also here can be seen R20 that the younger a person, the easier he was able to use PAL4. R21 R22 In terms of usability, the main finding was the system is sometimes difficult to R23 understand by the clients. It was not designed together with the target group R24 (clients and family caregivers), and was not tested by the target group prior to R25 implementation. It is currently not possible to individualize the lay-out of the system. R26 R27 system impact R28 The greatest positive impact on the client was on self-care by using the agenda to R29 structure the day. Another positive result came from the leisure feature that brought R30 enjoyment. R31 R32 R33 R34
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R1 For family caregivers the system asked for extra effort and time to learn and use the R2 system. In the long run it could reduce their burden of care. R3 R4 The cost analysis showed that it is more cost effective for clients with dementia to R5 live at home with the system than to stay in a nursing home. Although – as expected- R6 cost-effectiveness increases if more clients stay at home for more months, we do not R7 know for how long staying at home is an option. However, most people in Europe R8 prefer to stay home for as long as possible (3), but the burden on family caregivers and R9 homecare organizations has a limit. If the different stakeholders, like governments R10 and health insurance companies would take into account cost reductions effected by R11 eHealth technologies, their roll out could be better supported financially. R12 R13 Going beyond the direct cost reductions, professional caregivers would also save R14 time (and hence costs) by using the system since home visits could be reduced in R15 number without lowering the quality of care. R16 R17 limitations R18 The above-mentioned criteria are conditions for a new technology to be adopted, but R19 beyond that, having a smooth process for implementing that technology and a good R20 fit between the technology, the users, and the supporting organizations is important. R21 The problems which occurred during this project are the result of a strategy that was R22 technology-driven instead of user centred. A better approach would be to use the R23 holistic framework of Van Gemert et al. (18) where the whole process in a healthcare R24 setting starts with involving the stakeholders in the design process and involving R25 them in redesigning technology for their end-users. R26 R27 The limitations of this study were first of all the inability to prove quantitatively, that R28 someone could stay home for a longer period of time in comparison with living in a R29 nursing home. R30 R31 Another limitation concerns the log files of the system. Who is using the system (client R32 or family care giver) is not recorded. The log files also fail to show the amount of time R33 R34
144 spent on the system, but only the number of clicks a person made. The amount of R1 time spent with video contact could not be measured either. R2 R3 The role of the client with dementia is minimal in this research; the focus was on R4 impact on family and professional caregivers and direct costs. Caregivers have a R5 tendency to emphasize care issues such as the management of IADL (Instrumental R6 Activities of Daily Living) like shopping or meal preparation), ADL (Activities of Daily R7 Living) and safety issues (24). Clients with dementia report more often on how R8 difficult it is to find something to do, to sleep or to live with the insecurity that you do R9 not know where you are or what year it is. Consequently, there is a marked difference R10 in the needs of people with dementia and the interests of the family members, who R11 provide care or the professional caregivers. In this study, clients were not asked R12 directly about their experiences with the system. Obtaining reliable answers would R13 be a challenge, because of their memory problems. R14 R15 Finances 5 R16 For the cost analysis, we only looked into the cost paid by the Dutch government for R17 taking care of people diagnosed with dementia. We compared the two main options R18 for people diagnosed with dementia. After reaching a certain state of needing care R19 people can either be admitted to a nursing home or receive home care. We only R20 looked to the costs paid by the government, because other costs differ too much R21 among clients. Both sides (nursing home and at home) in this study exclude the R22 mandatory personal financial contribution. And this is where the complex discussion R23 starts. This contribution differs from person to person, as it depends on the amount R24 of care you consume and your income. R25 We also did not take into account normal living expenses at home like rent, groceries, R26 other shopping, or the qualitative benefits (like higher quality of life, because R27 someone can stay home for a longer period of time). Not included were also extra R28 costs, created by the burden for a family caregiver. If we were able to catch these R29 additional costs, it would make visible that cost reduction is a complex goal. Our R30 figures are only a crude estimation. R31 R32 R33 R34
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R1 Another issue in the Netherlands nowadays is the way funding for healthcare is R2 organized. The healthcare organizations that invest in new eHealth technologies are R3 usually not the ones that benefit from cost reductions. For example in this specific R4 case study the healthcare organization invests with the aim of let their clients live at R5 their own home for a longer period of time. Financially it might be more profitable to R6 transfer these clients to a nursing home organization. The Dutch Healthcare Authority R7 benefits from letting a person live at their own home for a longer period of time. R8 R9 recommendations R10 Our pilot study needs to be followed by a large scale endeavour to allow for a R11 quantitative assessment of impact and cost reductions. Such a large scale study could R12 also include clients with other conditions besides dementia. This future research R13 should focus more on client perspectives instead of the perspective of family or R14 professional caregivers and a multitude of research methodologies are needed (18). R15 R16 Further cost investigation should also consider living expenses, payments by clients, R17 video contacts instead of house visits etc. This could generate more evidence that R18 using technologies in dementia care reduces costs. R19 R20 Still this pilot showed several possible improvements. This concerns a better R21 education and training of clients and all of their caregivers as to use, structure, aim R22 and working of the system. Systems like PAL4-dementia are most effective when R23 introduced in the early phase of dementia. Efficacy may also be increased by the R24 family caregiver starting to put content into the system before the client starts to use R25 it. When no family caregiver is available, the healthcare organization should find a R26 buddy to do this. The PAL4 Company needs to state more clearly the requirements R27 for the healthcare organization before starting a PAL4 Dementia project. This includes R28 the need for an experienced occupational therapist in the project group, who has R29 enough time available for house visits to train clients and family caregivers. R30 R31 R32 R33 R34
146 In terms of uptake of the system, several suggestions were made by family and R1 professional caregivers: R2 • develop together with the target group and do usability tests. R3 • develop different interfaces for client and partner (the partner wants R4 other information than the client). R5 • all buttons should be on the opening page. R6 • install different agenda interfaces, week, full day, or up to 15:00H, R7 refreshing after that time. R8 • make games simple, in Dutch, in large print, and without a time limit. R9 • replace side icons by words. R10 • make pictures up loadable to the agenda, e.g., a picture of the R11 housekeeping person who is coming. R12 • make the ringtone unlike that of the clients’ phone. R13 • include a repetition feature for entering appointments by caregivers. R14 • add the option of spoken messages. R15 5 R16 acknowledgement R17 We are thankful to the care organizations ZZG Zorggroep and Bruggerbosch and the R18 company Focus Cura BV\, for their support in conducting this evaluation. R19 R20 R21 R22 R23 R24 R25 R26 R27 R28 R29 R30 R31 R32 R33 R34
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R1 references R2 1. Wimo A, Prince M. World Alzheimer Report. London: Alzheimer’s Disease International, R3 2010. R4 2. Nijhof N, van Gemert-Pijnen JEWC, Dohmen D, Seydel ER. Dementie en technologie. Een studie naar toepassingen van techniek in de zorg voor mensen met dementie en R5 hun mantelzorgers. Tijdschrift voor Gerontologie en Geriatrie. 2009;40(3):113-32. 3. Tinker A. Housing for elderly people. Reviews in Clinical Gerontology. 1997;7(2):171-6. R6 4. Alm N, Astell AJ, Ellis MP, Dye R, Gowans G, Campbell J. A cognitive prosthesis and R7 communication support for people with dementia. Neuropsychological Rehabilitation. 2004;14(1-2):117-34. R8 5. Astell AJ, Ellis MP, Bernardi L, Alm N, Dye R, Gowans G, Campbell J. Using a touch screen R9 computer to support relationships between people with dementia and caregivers. Interacting with Computers 2010;22 (4):267-75. R10 6. Meiland FJM, Reinersmann A, Bergvall-Kareborn B, Craig D, Moelaert F, Mulvenna M, R11 Nugent C, Scully T, Bengtsson JE, Dröes RM. COGKNOW; Development of an ICT-device to support people with dementia. The Journal on Information Technology in Health- R12 care 2007;5(5):324-34. 7. Sixsmith A. New technologies to support independent living and quality of life for R13 people with dementia. Alzheimer’s Care Quarterly 2006;7(3):194-202. R14 8. Meiland FJM, Bouman AIE, Sävenstedt S, Bentvelzen S, Davies RJ, Mulvenna MD, Nugent CD, Moelaert F, Hettinga ME, Bengtsson JE, Dröes RM. Usability of anew R15 electronic assisstive device for community-dwelling persons with mild dementia. R16 Aging & Mental Health. 2012;16(5):584-91. 9. Meiland FJM, de Boer ME, Overmars-Marx T, Verhaeghe S, van Blanken M, Stalpers- R17 Croeze I, Ebben PWG, Snoeck CM, van der Leeuw J, Karkowski I, Dröes RM. Rosetta- R18 ondersteunende technologie voor mensen met dementie en hun mantelzorgers. In: van Hoof J, Wouters E, editors. Zorgdomotica. Houten: Bohn Stafleu van Loghum; R19 2012. p. 151-7. R20 10. World Health Organization. Medical devices: managing the mismatch: an outcome of the priority medical devices project. Geneva, Switserland: WHO Press,2010. R21 11. Atienza AA, Hesse BW, Gustafson DH, Croyle RT. E-health research and patient-centered care examining theory, methods, and application American Journal of Preventive R22 Medicine. 2010;38(1):85-8. R23 12. Black AD, Car J, Pagliari C, Anandan C, Cresswell K, Bokun T, McKinstry B, Procter R, Majeed A, Sheikh A. The impact of eHealth on the quality and safety of health care: a R24 systematic overview. PLoS Med 2011;8(1). R25 13. Catwell L, Sheikh A. Evaluating eHealth Interventions: The Need for Continuous Systemic Evaluation. PLoS Med. 2009;6(8). R26 14. Yusof MM, Kuljis J, Papazafeiropoulou A, Stergioulas LK. An evaluation framework for R27 health information systems: human, organization and technology-fit factors (HOT-fit). International Journal of Medical Informatics. 2008;77(6):386-98. R28 15. Pagliari C. Design and evaluation in eHealth: Challenges and implications for an R29 interdisciplinary field. Journal of Medical Internet Research. 2007;9(2). 16. Kaufman D, Roberts WD, Merrill J, Lai TY, S. B. Applying an evaluation framework R30 for health information system design, development, and implementation. Nurse Researcher. 2006;55(2 Suppl):37-42. R31 17. Van der Meijden MJ, Tange HJ, J. T, Hasman A. Determinants of success of inpatient R32 clinical information systems: a literature review. Journal of the American Medical Informatics Association. 2003;10(3):235-43. R33 R34
148 18. Van Gemert-Pijnen JEWC, Nijland N, Ossebaard HC, van Limburg AH, Kelders SM, Eysenbach G, Seydel ER. A holistic framework to improve the uptake and impact of R1 eHealth technologies. Journal of Medical Internet Research. 2011;13(4):e111. R2 19. Cahill S, Begley E, Faulkner JP, Hagen I. ‘’It gives me a sense of independence’’- Findings from Ireland on the use and usefulness of assistive technology for people R3 with dementia. Technology and Disability. 2007;18(2-3):133-42. R4 20. Nijhof N. Report project “Staying home longer for people with dementia with technology’’ June 17. Nijmegen: ZZG Zorggroep,2008. R5 21. Fokkema E. CMDB Clients PAL4 dementia ZZG Zorggroep. Zeist, 2011 [cited 2011 R6 December 20]; Available from: www.focuscura.nl/cmdb. 22. Folstein MF, Folstein SE, McHugh PR. Mini-mental state. A practical method for grading R7 the cognitive state of patients for the clinician. Journal of psychiatric research. 1975;12 (3):189-98. R8 23. Lauriks S, Reinersmann A, van der Roest HG, Meiland FJ, Davies RJ, Moelaert F, R9 Mulvenna MD, Nugent CD, Dröes RM. Review of ICT based services for identified unmet needs in people with dementia. Aging Research Reviews. 2007;6(3):223-46. R10 24. Topo P. Technology studies to meet the needs of people with dementia and their R11 caregivers.A literature review. Journal of Applied Gerontology. 2009;28(5):5-37. 25. Sixsmith A. An evaluation of an intelligent home monitoring system. Journal of R12 Telemedicine and Telecare. 2000;6(2):64-72. R13 26. Cahill S, Macijauskiene J, Nygård AM, Faulkner JP, Hagen I. Technology in dementia care. Technology and Disability. 2007;19(2-3):55-60. R14 27. Duff P, Dolphin C. Cost-benefit analysis of assisitive technology to support independence for people with dementia - Part 2: Results from employing the ENABLE cost- benefit R15 model in practice. Technology and Disability. 2007;19(2):79-90. 5 R16 28. Docampo Rama M, de Ridder H, Bouma H. Technology generation and age is using layered user interfaces. Gerontechnology. 2001;1(1):25-40. R17 29. Bouma H, Fozard JL, van Bronswijk JEMH. Gerontechnology as a field of endeavour. R18 Gerontechnology. 2009;8(2):68-75. R19 R20 R21 R22 R23 R24 R25 R26 R27 R28 R29 R30 R31 R32 R33 R34
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chapter 6
social contact technology residential care:
the use of a technology-based leisure activity to support social behavior of people with dementia
Chapter 6 is based on: Nijhof N, van Hoof J, van Rijn H, van Gemert-Pijnen JEWC. The use of an eHealth based leisure activity to support social behavior for people with dementia. Submitted. Chapter 6
R1 abstract R2 R3 This paper presents the results of an evaluation of an eHealth-supported leisure game R4 for people with dementia in relation to the stimulation of social behaviour. This used R5 leisure game aims to stimulate social behaviour and interaction among participants R6 with the support of technology (TV, radio, telephone and treasure box). The game R7 was played in a Dutch nursing home with people living in the nursing home or visiting R8 the organization’s day-care centre. A mixed-method research design was applied, R9 with observations using the Oshkosh Social Behaviour Coding scale, whereby the R10 statistical method bootstrapping was used because of the small sample size (n=10 R11 participants, multiple rounds of observation), as well as interviews with the activity R12 therapists. Overall, no large differences were observed for social behaviour between R13 the leisure games with or without the use of technology. But the eHealth leisure R14 game does create and stimulate social behaviour. It shows more active behaviour R15 by people with high MMSE scores and by female. eHealth in leisure activities can be R16 supportive for activity therapists organizing the activities, because it helps them to R17 come up with new topics to address in their work. R18 R19 R20 R21 R22 R23 R24 R25 R26 R27 R28 R29 R30 R31 R32 R33 R34
152 introduction R1 R2 Worldwide, there were an estimated 35.6 million people with dementia in 2010. By R3 2050 an increase to 115.4 million is expected (1). There is a widespread recognition R4 that innovative approaches are required to to meet the overwhelming demands R5 that will be placed upon health and welfare systems in the future (2). These health R6 and welfare systems should not only focus on personal care and domestic tasks of R7 people with dementia, including the differences between male and female dementia R8 patients (3) or the phase of dementia, for example in relation the Mini Mental State R9 Examination (MMSE) (4), but also include opportunities to socialize, engagein R10 activities and to achieve a sense of social integration (5). R11 R12 Several studies have indicated that people with dementia have a need for company, R13 daytime activities, self-worth, expression of thoughts, social contact and a sense of R14 belonging. Meaningful leisure activities can support people with dementia in these R15 basic needs, which are specifically related to improving physical function, reducing R16 depression and changing behavioural symptoms (6-9). In long-term care people R17 with dementia express happiness and have open eyes more often during recreation 6 R18 times in comparison to other times of the day, so recreation stimulates one’s quality R19 of life (10). Leisure should create opportunities to have fun, make a difference, R20 seek freedom, be with, be me, find balance, grow and develop (11). Numerous R21 leisure activities are based on traditional means, such as board games. Innovative R22 approaches, which are required as mentioned before, could also be used for leisure R23 activities. R24 R25 Various studies have shown that more innovative approaches, such as the use of R26 eHealth, can also be supportive in daily care for people with dementia (12-17). R27 Eysenbach defined eHealth in 2001 as: eHealth is an emerging field in the intersection R28 of medical informatics, public health and business, referring to health services and R29 information delivered or enhanced through the Internet and related technologies. In R30 a broader sense, the term characterizes not only a technical development, but also R31 a state-of-mind, a way of thinking, an attitude, and a commitment for networked, R32 R33 R34
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R1 global thinking, to improve health care locally, regionally, and worldwide by using R2 information and communication technology.” R3 This involves that the use of eHealth is not viewed as merely a tool or instrument but R4 that is has to be considered as a way to reinvent the healthcare delivery process. In R5 light of this view, we set up several studies on dementia care exploring the impact R6 of eHealth on care delivery, costs and wellbeing. Especially dementia is important R7 because of the vulnerability of these people and the increase as consequence of R8 aging. R9 R10 eHealth might also be supportive in leisure activities to improve the abovementioned R11 needs of people with dementia (for example need for social contact), and, through R12 fulfilling these needs, improve the health and well-being of the people with dementia. R13 A small number of studies on the use of eHealth used to stimulate social behaviour R14 showed positive results in relation to a more active role and positive engagement R15 of the persons with dementia (18, 19). But, overall, little is known about the use of R16 eHealth in leisure activities. R17 The ultimate aim of this paper is explore the impact of eHealth supported leisure R18 activities on wellbeing of people with dementia and the work of activity therapists R19 (which are the initiators of leisure activities). R20 R21 This paper presents the results of the evaluation of an eHealth supported leisure R22 activity called the Chitchatters game (CC) to get an insight into the use of eHealth in R23 leisure activities. The CC aims to stimulate social behaviour and interaction among R24 participants with dementia with the support of eHealth, which triggers people to R25 come up with memories (20). These triggers can be made people-centred, so when R26 needed, also specifically for young people with dementia. This is the first study R27 evaluating the CC. The CC was played in a nursing home with people living in the R28 nursing home or visiting the organization’s day-care centre. Research on the use of R29 eHealth in supporting leisure activities for people with dementia is not extensive, but R30 can be effective because of the possibility to create people centred care, make the R31 activity more interactive and be supportive for activity therapists. To partly address R32 the research shortfall, this paper draws upon both qualitative and quantitative R33 R34
154 components to get more insight in the use of eHealth for leisure activities. Because R1 the purpose of the CC is to stimulate social behaviour and literature shows that social R2 behaviour increases the well being of people with dementia (21) we focused on the R3 social behaviour which occurred during the CC sessions. R4 R5 The research questions for this study were: R6 • Which social behaviour occurs during a CC session? R7 • What are the differences in social behaviour for the CC differentiated by R8 MMSE and gender? R9 • What are the differences in social behaviour between leisure games that do R10 or do not use eHealth (Chitchatters versus Questiongame)? R11 • What are the experiences of therapists with the leisure game CC, related to R12 their daily work? R13 • Do they experience the CC as easy to use for themselves? R14 • What are the experiences of therapists with the leisure game CC, related to R15 the social behaviour for people with dementia? R16 • Do they experience the CC as easy to use to the people with dementia? R17 6 R18 For all these research question social behaviour is related to verbal and non verbal R19 interactions which have a positive character, like answering, smiling and laughing. R20 R21 methods R22 R23 In this section, the interventions, study design, study setting, study participants, R24 research instruments and data analysis will be described. R25 R26 intervention description R27 The Chitchatters R28 The Chitchatters is a leisure activity developed for people with dementia bytwo R29 industrial designers from Delft University of Technology, The Netherlands (20). It is R30 intended to stimulate social behaviour and interaction among people with dementia. R31 The activity includes four interactive objects: a television, a radio, a telephone and R32 R33 R34
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R1 a treasure box (Figure 1), each of which triggers memories in its own specific way R2 using Adobe (Macromedia) director software. The television shows movies, the R3 radio plays music, the telephone tells poems, and the treasure box reveals objects R4 chosen to a source for reminiscence and promote tactile stimulation. These objects R5 were chosen because of their interactive character. The CC requires the participants R6 to play while seated in a circle surrounded by the objects and an activity therapist R7 who’s leading the game sits within this circle. The therapist assigns an object with a R8 remote control, and a lamp placed aside the object turns on. The participant with R9 dementia then needs to activate or manipulate this object. These actions include R10 pushing the television button, turning on the radio’s volume, answering the phone, R11 and opening the treasure box. After these actions, the object’s content is revealed. R12 The designers delivered the content (movies, music, and children’s songs) used in R13 this study in collaboration with the therapists. The Regional Archive Eindhoven in R14 The Netherlands provided additional movies related to the region where the CC was R15 used for sessions. R16 R17 After the participants have watched, listened to or touched the fragments or objects R18 (for example TV fragment and object from the treasure box), they are reminded R19 about something from their own past. This, in turn, should make them come up R20 with a personal story or anecdote related to this fragment or object from the CC. R21 This story or anecdote then activates the other participants carrying out the activity, R22 which is supposed to start a conversation and interaction between the people with R23 dementia themselves and with the activity therapist (who is in the circle with the R24 people playing the game) (20). R25 R26 The objects of the CC have an old-fashioned look, in order to create a familiar “look- R27 and-feel” for the players. The CC can be made people centred by selecting a specific R28 category in the software to show for example all fragments about ice-skating. After R29 the selection of a specific category or timeframe in the software (made with the R30 remote control by the therapist), the objects (TV, radio, telephone) download the R31 content from that category or timeframe. For instance, the category might be ice- R32 skating or the timeframe might be the flower power era. R33 R34
156 R1 R2 R3 R4 R5 R6 R7 R8 R9 R10 R11 R12 R13 R14 R15 R16 R17 6 R18 R19 R20 R21 R22 R23 R24 R25 R26 R27 R28 R29 R30 R31 Figure 1 Activity setting of the Chitchatters; television, telephone, treasure box and radio R32 R33 R34
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R1 The designers introduced the CC to the therapists, organizing a meeting where R2 explaining the CC in detail, clarifying the aim of the activity and demonstrating the R3 process. After a few weeks, they also explained to two therapists the possibility of R4 uploading movies and music. R5 At the start of this study, the nursing home had possessed the CC for three months R6 and respondents had played with it once or twice. The therapists working in the R7 nursing home are responsible for weekly activities for people with dementia living in R8 the participating nursing home or who visit this facility for day-care. R9 R10 Question Game R11 The Question Game (QG) was used as a comparison activity (Figure 2) without the use R12 of eHealth. The QG is created by a company that is specialized in designing products R13 for both younger and older people with disabilities. The QG is a board activity carried R14 out on a table. A player is asked to throw a colour dice. The colour matches with a R15 category on a question card. The different colours relate to different themes, from R16 proverbs, songs, language, nature and an ‘all sorts’ category. The activity therapist R17 reads the question out loud to the whole group, but the participant who threw the R18 dice, may answer the question first. If the participant does not know the answer, the R19 others are allowed to help. The answers should trigger the thrower’s memory and R20 invite other players to start telling stories as well (22). R21 The purpose of and way of playing with the QG is similar to the CC; it is based on the R22 use of long-term memory, trying to trigger an individual’s and group’s memories, R23 reminiscence therapy, group activity, sedentary activity in a circle, requiring an initial R24 physical activity (throwing the dice for the QG or turning on the television for the CC) R25 and one or two activity therapists are present. QG also differs from the CC: for CC, R26 everybody is free to respond, whereas for the QG, only one participant is supposed to R27 respond. Moreover, the CC can be customized, which is not possible for the QG. The R28 nursing home manager and activity therapists selected the QG after they received R29 an explanation of the CC activity. The principal researcher asked them for an activity R30 with similar aims to the CC’s: giving a trigger for social behaviour and interaction. R31 The therapists were familiar with the QG at start of the study. Therefore, this activity R32 did not require any instructions. It was played about once a week. R33 R34
158 R1 R2 R3 R4 R5 R6 R7 R8 R9 R10 R11 R12 R13 R14 Figure 2 Question Game R15 R16 study design R17 For the evaluation of an eHealth application in healthcare a mixed-method design, 6 R18 combining qualitative methods with quantitative methods, is proposed to be the best R19 option (23-27). The data from the different sources can be complementary and provide R20 a broader view (27). The mixed method used in this study involved observations R21 during the play of the games by people with dementia by using the Oshkosh Social R22 Behaviour Coding (OSBC) scale (28, 29), to answer the research questions related to R23 the occurrence and differences (MMSE, female/male and CC/QG). In addition, semi- R24 structured interviews with the activity therapists were undertaken to get insight in R25 the research questions related to supportiveness and ease of use for the therapist R26 and social behaviour and ease of use for the person with dementia. R27 R28 Participants played the game for two times each, so four play rounds in total for 45 R29 minutes. One participant played the activities three times (she missed one of the QG R30 activity because of a doctor’s appointment); one participant played the CC and QG R31 only once instead of twice (he had another appointment that day). So the purposed R32 R33 R34
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R1 set of data would be 40 (10 participants played the activities four times), because R2 of the missing participants, we collected a set of 37 observations from 45 minutes. R3 R4 study setting R5 One researcher observed the participants during the activity in an observational R6 study to answer the research questions related to social behaviour and usability. R7 The researcher was seated behind the circle in which the activity was played, so the R8 researcher was not participating in the activity itself. In the morning, the CC and in the R9 afternoon the QG were each tested for 45 minutes. One group of participants with R10 more severe dementia played both of the activities for 25 minutes. The observations R11 were carried out twice in a two month period (October and November 2009), so R12 every person played the CC and the QG for two times. A total of 16 activities were R13 played for four groups in total. Group sizes ranged from three to eight participants R14 assisted by one or two activity therapists. These activity therapists were familiar to R15 the group. In this nursing home certain therapists were linked to specific groups. In R16 some cases two groups were playing together, so there were two therapists steering R17 the group activities. R18 R19 study participants R20 The study participants comprised people with dementia and activity therapists. R21 R22 A total of 21 out of 196 persons with dementia living in the nursing home ‘’De R23 Landrijt’’ or visiting the day-care centre in the city of Eindhoven, The Netherlands, R24 were selected to participate in the activity because of their capability to play both R25 activities (judgement by the head of the activity therapists). A total of ten persons R26 were observed (because of the possibility to observe only three or four persons R27 at a time by the researcher), a responsible relative agreed for the participants to R28 participate in the study. In total, five participants from the day-care group and five R29 participants from the nursing home group played both of the activities. R30 The participants aged between 52 and 86, with a mean of 69. There were six females R31 and four males. Participants’ MMSE levels were established by activity therapists R32 trained to do such evaluations. The MMSE of participants differed from 3 to 28, with R33 R34
160 a mean of 18, with two missing scores (because it was too confronting for these R1 participants to do the MMSE test or because they were not able to answer the R2 questions because of an inability to speak). These missing scores were seen as low R3 MMSE scores. Bbased on the judgment of activity therapists, this resulted in six low R4 MMSE scores (15 or lower) and four high MMSE scores. R5 R6 The five participating activity therapists were all female, aged from 22 years to 42 R7 years with a mean of 27 years. Their education was mid-level for social workers, R8 specializing in geriatric care. The participating activity therapists were all the R9 therapists working in this facility. Both the manager and the activity therapists R10 consented to their participation in the research and the videotaping. R11 R12 research instruments R13 Observational case study R14 The Oshkosh Social Behaviour Coding (OSBC) scale, which measures social behaviour R15 for people with dementia, was used for the research question related tothe R16 occurrence and differences in social behaviour. In a comparative analysis between R17 the Greater Cincinnati Chapter Well Being Observation tool (30) and the OSBC, the 6 R18 OSBC appears to be a valid and practical tool. The scale encompasses both verbal R19 and non-verbal, social and non-social behaviour, which are the constructs and are R20 divided in 21 items (28, 29). During the observation, the observers scored how often R21 a participant showed a certain type of behaviour, for instance, smiling or gesturing. R22 If a participant started smiling, asked a question and started smiling again, this R23 was scored as two scores, one for smiling and one for asking a question. The OSBC R24 appears to be a valid and practical tool for measuring social behaviour for people R25 with dementia (28, 29). R26 R27 R28 R29 R30 R31 R32 R33 R34
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R1 The original lists of items of the OSBC scale were translated into Dutch by one of R2 the authors and translated back by another author for reasons of validity before the R3 observations started. The scale was further modified to enable the monitoring of R4 multiple participants: R5 • A number of items were left out because they did not occur while playing R6 the two activities or they were obsolete given the goals of the study. The R7 scores left out were: greetings, please, thank you, requests, praise, empathy, R8 interruptions, demands, arguing, frowning, physically assisting another, R9 receiving or offering object, touching, fighting, repetitive speech, fidgeting, R10 directed mobility, self-injurious. The omissions do not affect the validity of R11 the scale, or the way the results of this study can be used. R12 • The item ‘’answering’’ was split into yes/no answers, sentence answers, and R13 story answer (which could be a personal story or anecdote). This allowed for R14 a more specific scoring of how participants responded. R15 • The item ‘’singing’’ was seen as non-social behaviour by the OSBC, but in this R16 specific game ‘’singing’’ was a social activity, because singing was stimulated R17 by both of the games to do together with the group playing the games. R18 • The item ‘’complaints’’ was seen as social behaviour by the OSBC, but in R19 this specific game ‘’complaints’’ were a non-social activity, because the R20 complaints had a negative overtone. R21 • The item ‘’smiling’’ was separated in laughing out loud and smiling (just by R22 moving the mouth), because there is a difference in intensity of laughing, R23 when it is done out loud or just by moving the mouth. R24 Finally the following constructs and items remained: R25 • Social verbal: comments, yes/no responses, sentence answers, story R26 answers, questions, joking, singing R27 • Social non-verbal: laughing, smiling, gesturing R28 • Non-social verbal: complaints, screaming, talking to self R29 • Non-social non-verbal: observing/listening, sitting alone/not observing, R30 sleeping, leaving an activity, wandering and handling object R31 R32 R33 R34
162 From the position of the researcher, the researcher scored three or four participants R1 simultaneously. The researcher was seated opposite their designated participants, so R2 that she could clearly see the facial expressions and behaviours. The activity sessions R3 were videotaped so that scores could later be confirmed if there was any uncertainty R4 about the behavioural coding. R5 R6 Interviews with activity therapists R7 A total of five activity therapists were interviewed about the CC after the first activity R8 session. These interviews were meant to get an insight in the research question R9 about the CC in their daily work, social behaviour and easy to use. The interviews R10 were used as an in-depth method to complement the OSBC data. R11 An interview session had three stages: a start, interview and wrap-up. The start R12 (approximately three minutes) included an explanation about the purpose of the R13 interview. The therapist could then ask any questions that she might have. All R14 therapists signed a consent form so that the sessions could be audio taped. After R15 the orientation, the interview started (which lasted for approximately 25 minutes). R16 A semi-structured interview scheme was used, containing questions related to the R17 supportiveness of the CC in their work (for instance, which advantages do you have 6 R18 from the CC in your work) and the ease of use of the CC for the therapists themselves. R19 After these questions we focused the questions for the therapist more on the people R20 with dementia; the social behaviour displayed during the activity by the people with R21 dementia (did participants talk about the CC, and so on) (20) and the ease of use for R22 the people with dementia (was the use of the lamp clear for participants, and so on) R23 (31, 32). After the interview, the researcher thanked the therapists verbally for their R24 cooperation and offered to send them a copy of the final report. R25 R26 data analysis R27 Observational case study with OSBC scale R28 The collected observation data of the QG for the two games played by the same R29 person were used in the same group of data for the analysis. This because the R30 participants played the game so often that differences between the two games of R31 the QG in the observational study will be brought to a minimum. For the CC a t-test R32 R33 R34
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R1 was carried out between the first round of game and the second round of game to R2 see if there were any significant differences. There were no significant differences, so R3 the first and the second round of the game (two observations for one group) were R4 used in the same group of data for the analysis. So all the data have been used in one R5 group for analysis. R6 R7 All the scores were manually added up. SPSS 18.0 had been used for adding up the R8 scores, for the items separately and for the scores of the constructs: answering in R9 total, smiling in total, and so on, and social non-verbal behaviour (so all items for R10 this construct were added up), social verbal behaviour, etc. The main purpose was to R11 study the occurrence of social behaviour, differences in MMSE and gender and the R12 differences between the two activities. The differences in gender and MMSE have R13 been chosen, because of the focus on these differences in the care for people with R14 dementia (5). The t-test was first carried out for the differences between the CC and R15 the QG. After the initial data analysis a distinction between participants with low R16 and high MMSE scores was made. Another distinction was made in the difference R17 between female and male participants. R18 R19 Because the care for people with dementia is more and more tailored and therefore R20 small scaled, the groups which could play the leisure activities were only small. This R21 has implications for the sample size. To overcome this, bootstrapping has been R22 used to analyze the data. Bootstrap use the data of this observational study as a R23 ‘’surrogate population’’, for the intention of approximating the sampling distribution R24 of a statistic (33). The randomly selected raw data from the first round are used for R25 replacement by a computer program (33). The observations have to be from an R26 independent and identically distributed population, which is the case for this study. R27 This method of bootstrapping generates samples from the original observed data, R28 whereby the original characteristics of these data are used. Our sample contains 10 R29 people with dementia. We put all the 10 persons in a basket, and then from these R30 10 persons, we draw 1 person randomly and record the data for that person. After R31 we have recorded it, we put the person back in the basket. Then we make another R32 random draw, this is sampling with replacement. We did this 100 times and it’s called R33 R34
164 bootstrap sampling. From a sample we can only get one statistic, for example mean. R1 The confidence intervals of this mean or distribution of this mean is not known. R2 Bootstrap sample give more details on the distribution of this mean, or probability R3 of this mean (34). R4 R5 In fact it means we used the original data to aggregate form a small sample size R6 to n=100 sample size via a formula that translates the data into: means, standard R7 deviations and for differences between two groups the p value. R8 R9 The bootstrap method has the advantage that it can also be used for uncommon R10 statistical distributions, especially non-normal distributions as well as the possibility R11 to work with small sample sizes (35). Bootstrapping was developed by Efron in 1979 R12 and has proven to be valid for any kind of data, random and non-random data (36) R13 and has been widely used in applied statistics (37). R14 R15 For all the data sets, QG and CC, low and high MMSE and male or female the resampling R16 was done for 100 times using Excel 2010 (34), whereby we separately compared QG R17 and the CC, MMSE low and high and female or male. The average mean and SD have 6 R18 been calculated for all the scores separately to answer the research questions related R19 to the occurrence and difference in social behaviour. A set oft -tests have been done R20 between the CC and QG, low and high MMSE and female or male, whereby the p R21 value was determined. R22 R23 Interviews with activity therapists R24 A coding scheme to answer the research questions related to the supportiveness of R25 the CC in the work of the activity therapists, ease of use from CC for therapists and R26 social behaviour (20) and ease of use for people with dementia(31). The therapists R27 were asked a total of 21 questions. The transcripts were read several times in their R28 entirety to capture the experiences of the activity therapists to aid in the coding R29 scheme. R30 R31 R32 R33 R34
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R1 results R2 R3 In this section the results for the observational study and the interviews with the R4 activity therapists will be described. R5 R6 observations R7 Occurrence social behaviour CC R8 In the observation study, the social behaviour as displayed during a session of the R9 Chitchatters was observed. In Table 1 the occurrence from the different social and R10 non-social behaviours is registered. The mean stands for the mean of the number of R11 times a person for example made any comments. R12 R13 As shown in Table 1, the means of social behaviour are higher (so higher frequencies R14 of this kind of behaviour) than that of non-social behaviour during a session of R15 the Chitchatters (45 minutes of play). The top 5 of behaviour is comments, yes/no R16 responses, laughing, sentence responses and smiling, which is all social behaviour. R17 Overall people make a lot of comments during the game, which can be seen as R18 positive as they are actively involved in the game. These results show some high R19 standard deviations for the occurrence of ‘’comments’’ and ‘’talking to self’’. R20 R21 R22 R23 R24 R25 R26 R27 R28 R29 R30 R31 R32 R33 R34
166 table 1 Occurrence of social and non social behaviour during the Chitchatters game expressed R1 in mean and SD R2 chitchatters (cc) R3 (n= 18, 100 bootstrap samples) R4 Constructs mean sd social verbal behaviour 5.09 3.31 R5 social non-verbal behaviour 3.25 1.98 R6 non-social verbal behaviour 0.78 1.41 R7 non-social non-verbal behaviour 0.61 0.93 Items from social verbal behaviour R8 comments 14.22 14.67 R9 Yes/no responses 7.75 5.63 sentence responses 4.13 3.85 R10 story responses 2.85 3.76 R11 asking questions 1.57 1.72 R12 Joking 1.72 2.54 singing 2.23 1.90 R13 Items from social non-verbal behaviour R14 laughing 4.94 4.02 R15 smiling 3.75 3.75 Gesturing 0.90 1.15 R16 Items from non social non-verbal behaviour R17 observing/listening 0.70 1.25 sitting alone/not observing 0.39 0.93 6 R18 sleeping 0.38 0.96 R19 Wandering 0.68 1.74 R20 leaving an activity 0.25 0.50 handling objects 1.55 1.06 R21 Items from non social verbal behaviour R22 complaints (negative) 0.32 0.74 R23 screaming/yelling 0 0 talking to self 2.86 5.88 R24 R25 In the next section the results of the observational study are described in relation to R26 differences in MMSE and differences in gender and finally the comparison between R27 the CC (with eHealth) and the QG (without eHealth). The scores for (non-)social and R28 (non-)verbal behaviour are given for all constructs, and for the scores separately only R29 the significantly different scores are given. R30 R31 R32 R33 R34
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R1 Social behaviour occurrence differentiated for MMSE R2 As shown in Table 2 there is only a significant difference between ‘’observing’’ for R3 people with a low and high MMSE score. People with a high MMSE score tend to R4 observe more often, so watching the television or listening to the song of the radio. R5 Some of the SD’s are relatively high, for example also for observing. Overall can be R6 seen that the people with a low MMSE score higher for non-social and non-verbal R7 behaviour. R8 R9 table 2 Comparison for the Chitchatters between low and high MMSE score R10 constructs and mmse high mmse low P-value items (16 or higher) (15 or lower) (average from 100 R11 (n=8; 100 (n=11; 100 bootstrap samples) R12 bootstrapping samples) bootstrapping samples) mean (sd) mean (sd) R13 social verbal 5.19 (2.68) 4.90 (3.55) 0.48 R14 behaviour R15 social non-verbal 2.88 (1.58) 3.39 (2.14) 0.45 behaviour R16 non-social verbal 0.17 (0.30) 1.21 (1.78) 0.15 R17 behaviour R18 non-social non- 0.31 (0.38) 0.78 (1.05) 0.29 verbal behaviour R19 observing 0 (0) 1.20 (1.49) 0.04* R20 Note *p <.05, **p<.01, ***p<.001 R21 R22 Social behaviour occurrence differentiated for gender R23 A difference between female and male occurred in relation to the ‘’answers in yes R24 or no’’, female give more ‘’answers with yes or no’’ then male, which can be seen in R25 Table 3. Overall can be seen that female score higher on social behaviour then male. R26 R27 R28 R29 R30 R31 R32 R33 R34
168 table 3 Comparison for the Chitchatters between female and male R1 constructs and Female male P-value R2 items (n=11; 100 (n=8; 100 (average from 100 bootstrapping samples) bootstrapping samples) bootstrap samples) R3 mean (sd) mean (sd) mean (sd) R4 social verbal 5.68 (3.29) 4.26 (2.86) 0.38 R5 behaviour R6 social non-verbal 3.86 (1.90) 2.33 (1.52) 0.17 behaviour R7 non-social verbal 0.18 (0.32) 1.53 (1.97) 0.14 R8 behaviour non-social non- 0.24 (0.33) 0.99 (1.11) 0.21 R9 verbal behaviour R10 answer in yes or no 10.31 (6.06) 4.18 (2.90) 0.03* R11 Note *p <.05, **p<.01, ***p<.001 R12 R13 Social behaviour occurrence differentiated for CC and QG R14 As shown in Table 4 there is only a difference between the CC and the QG in relation R15 to ‘’answer in sentences’’ and ‘’handling objects’’. For the QG people responded more R16 in sentences and handled an object more often. But for the ‘’answer in sentences’’ R17 for the QG the SD is quite high as well. 6 R18 R19 table 4 Comparison of Chitchatters (CC) and Question Game (QG) R20 constructs and chitchatters cc( ) Questiongame (QG) P-value R21 items-mean (sd) (n= 18, 100 bootstrap (n= 19, 100 bootstrap (average from 100 samples) mean (sd) samples) mean (sd) bootstrap samples) R22 social verbal 5.09 (3.31) 7.41 (4.03) 0.15 R23 behaviour R24 social non-verbal 3.25 (1.98) 4.00 (2.35) 0.38 behaviour R25 non-social verbal 0.78 (1.41) 1.48 (2.32) 0.33 R26 behaviour R27 non-social non- 0.61 (0.93) 0.32 (0.62) 0.33 verbal behaviour R28 answer in sentences 4.13 (3.85) 11.63 (7.36) 0.00*** R29 handling objects 1.55 (1.06) 7.57 (4.31) 0.00*** R30 Note *p <.05, **p<.01, ***p<.001 R31 R32 R33 R34
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R1 Interviews R2 CC in the daily work of activity therapists R3 All therapists suggested that the CC supports them in their work. It is a very easy way R4 to come up with a topic to discuss with the group members. The younger therapists R5 in particular have difficulties in finding a topic that suits the people they work with, so R6 create patient centred activities is hard for them. It would be even more supportive R7 to have some kind of paper or leaflet with a description of the fragments, so they R8 knew exactly what the song or video sample is about. They also find it nice to play a R9 different kind of activity than the usual, more traditional, activities. R10 R11 Easy to use by activity therapists R12 In general, the therapists find the CC easy to use, but they were not familiar with R13 CC at the start of the study and only had access to a paper manual. Some therapists R14 mention that it is practical to turn on the CC a few minutes before playing the activity, R15 so it starts up immediately when the group is ready to play. Therapists, who lack R16 sufficient experience with computers, find it harder to use the CC. R17 Therapists mention that it is confusing that they always have to point the remote R18 control towards the television, also when they want to switch the light of the radio, R19 telephone, or treasure box. This is because the receiver of the remote control is R20 placed inside the television stand. This is not intuitive. R21 R22 Social behaviour for people with dementia R23 All five therapists stated that the CC stimulates social behaviour for people with R24 dementia based on their own observations. Participants with dementia see or hear R25 things, which is a trigger for their memory and they come up with stories from their R26 own past. The therapists say the CC gives more triggers than for example the QG. The R27 therapists specifically stressed that the CC makes participants go into a specific topic R28 more deeply than when involved in other activities, because CC triggers memories R29 and people come up with a story. All the therapists mentioned that the objects give a R30 trigger, but that the conversation needs to be initiated by a therapist most of the time, R31 because people do not start talking by themselves. One of the therapists assisting R32 the group of participants with more severe dementia, said that responding to each R33 R34
170 other’s stories is still difficult for the participants, because the memory of these more R1 severely demented people is more affected. Of the different objects, the therapists R2 identified the television most often as the main trigger for social behaviour, as it is R3 visual tool. R4 R5 Easy to use for people with dementia R6 Not all the participants with dementia easily understood how the CC worked. The R7 main complication was how to turn on the different objects. In the view of all the R8 therapists, the lamp that indicates the activated object is not noticed by any of the R9 participants. The therapists think it is also because the light is a white light, which goes R10 unnoticed in a day-lit room. The movies, songs and lyrics are recognized most often R11 by the participants aged 70 years and over. For the younger participants the content R12 is not always recognizable. The telephone was not considered to be sufficiently user- R13 friendly. The participants pick up the phone when it rings and say their name, but the R14 phone instantly starts playing a lyric. This is confusing for most of the participants. R15 R16 discussion R17 6 R18 Through observations and semi-structured interviews this evaluation of theCC R19 leisure activity highlighted the occurrence of social behaviour during leisure R20 activities whereby eHealth is used. This eHealth application is used to give triggers R21 to participants for stimulating social behaviour and social interaction. This evaluation R22 study provided insight into the occurrence of social behaviour during the CC game, R23 the differences in social behaviour between low and high MMSE participants, female R24 and male participants, and provided a comparison to a non-technological leisure R25 activity. Moreover, better insight was created through the views of the activity R26 therapists working with the CC. These findings both support and contribute to the R27 current literature in relation to leisure activities for people with dementia and the R28 fact that leisure activities can stimulate social behaviour and with that the well being R29 of people with dementia. In this study we specifically looked to the influence of the R30 use of an eHealth application in a leisure activity, this eHealth application made R31 it possible to create a people centred leisure activity and give interactive triggers, R32 which might have a positive influence to the occurrence of social behaviour. R33 R34
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R1 Previous work has shown the positive results of some sort of eHealth use in the field R2 of dementia care (12-17) and in the field of leisure in particular (18, 19, 38). A study R3 exploring the use of eHealth to stimulate social contact showed positive outcomes. R4 A multimedia system used in reminiscence therapy, which used photographs, music R5 and video clips, showed a more active role by people with dementia than during the R6 traditional reminiscence therapy (18). R7 The results of the CC evaluation indicate that the CC leads to a higher occurrence R8 of social behaviour (in relation to the frequency of behaviour) instead of non-social R9 behaviour, the highest frequencies are scored for comments, yes/no responses, R10 laughing, sentence response and smiling. This means that the CC stimulates R11 communication and empathy. This social behaviour is an indicator of improved R12 well-being. From the perspective of the observational study, the CC makes people R13 comment a lot on what they see and hear from the objects, which can be seen in R14 the high frequency of comments during the play of the activity. In relation to the R15 behaviour during the CC sessions, the results for the low and high MMSE scores R16 corresponded with the symptoms of a person in his stage of dementia. So people R17 with a low MMSE score tend to be somewhat less active most of the time and are R18 more frequently observing than people with a high MMSE score, this correlates with R19 the findings. R20 Looking at gender, the behaviour corresponded with the characteristics of the male R21 and female participants (3). Females more frequently engage in social contact and R22 giving answers than male participants do. R23 Overall the SD is relatively high in some cases, the explanation for this is that some of R24 the persons playing the game give a lot of comments in comparison with the other R25 players for example, which generates a high SD. So generally said there is a bigger R26 difference in the behaviour of people with dementia, some people are really quiet, R27 while others are talking all the time. R28 R29 A large difference between leisure activities that either do or do not use eHealth was R30 not seen in this study. The differences, which can be seen for the factors “answer R31 in sentences” and “handling an object”, are more outspoken for the QG due to the R32 character of the game. During the QG people have to throw a dice several times so R33 R34
172 the handling an object is more than during the CC. Also people have to answer a R1 question with the QG, so the answer is most of the time already in a sentence. For R2 the CC the purpose is more to create memories and so stories, which happens also R3 more at the CC, but was not a significant difference. R4 Both leisure activities lead to the occurrence of social behaviour, which could be R5 related to the well-being of a person with dementia. R6 R7 The activity therapists think that the CC can be supportive in their work, and they R8 provided several suggestions on how to improve the CC. One suggestion was to R9 make the content more applicable for younger participants (younger than 65 years), R10 for instance, by changing the music fragments. In addition, the younger activity R11 therapists indicated that additional information about the content would help them R12 in facilitating conversation, because they do not know much about the content R13 themselves. The fragments are older than the therapist themselves, which makes R14 it harder to start up the conversation and keep it going. All the therapists would like R15 to have other types of content, for example, about nature and animals. During the R16 CC sessions it was found that proactive therapists are a necessity to induce social R17 behaviour. With more relevant and recognizable content, people may not need full 6 R18 support and might start talking more on their own. R19 R20 While the findings of this study support much of what is already written in literature, R21 this study is also unique in its focus on leisure with the help of eHealth. Furthermore, R22 this study shows the enhanced occurrence of social behaviour during this specific R23 leisure activity. The findings of this study have implications for both practice and R24 further research. Looking at the practical implications it can be concluded that the CC R25 can be improved in several ways. R26 R27 The limitations of this study were that a comparison of the CC to another more R28 traditional activity is difficult to achieve. There are some relevant differences between R29 how the various activities are played and between the various features. In this study, R30 a selection was made of both activities because of their dependence on memory and R31 the shared aim of stimulating social behaviour. R32 R33 R34
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R1 The OSBC scale allows only for the detailed study of the occurrence of social and R2 non-social behaviour. It could be worth investigating if the CC stimulates social R3 interaction as well, because this could be different for leisure activities where there R4 is a possibility to create people centred activities and more interactive triggers. More R5 specifically can be looked to the amount of time and the way of communicating R6 between participants, such as whether a person talks to another person and for what R7 amount of time, and to investigate if they respond to each other’s questions. R8 R9 The final limitation is the fact that the statistical method bootstrapping gives a first R10 impression of the effects of using eHealth in leisure activities, but future research R11 remains necessary. It is hard to observe large groups of people with dementia, R12 because the care for these people is nowadays more and more small scaled. In this R13 study we used bootstrapping with 100 samples, because the number of included R14 patients in this study was too small to get reliable conclusions. Bootstrap is used R15 more in healthcare research in the last few years, for instance for constructing R16 confidence intervals for treatment differences, cost-effectiveness analysis in RCTs, R17 assess provider performance for providers with small numbers of observed events R18 (39-43). The value of bootstrapping in healthcare research is growing and also the R19 fact that it can be supplementary to the conventional statistical thinking (44). The R20 simplicity of the method allows its application more and more, like in this study for R21 a small group of respondents. But still with less than 20 participants where you use R22 this bootstrapping method, like in this study the outcomes may be less reliable. So R23 this research was exploratory to see if there were any differences between the two R24 games or within MMSE score and gender, but also to see the influence from eHealth R25 in leisure games for people with dementia. Further research will be necessary with R26 larger samples of clients. R27 R28 Overall, no large differences were observed for social behaviour factors between the R29 CC and the QG, but the CC does create and stimulate social behaviour. The CC shows R30 more active behaviour by people with high MMSE scores and by female. eHealth in R31 leisure activities can be supportive for activity therapists organizing the activities, R32 because it helps them to come up with new topics to address in their work. R33 R34
174 acknowledgements R1 The authors would like to thank the care organization SVVE Archipel, the Landrijt, R2 Eindhoven, The Netherlands, dr. L.S. van Velsen and dr. M.E. Zonderland for the R3 support in conducting this evaluation. R4 R5 R6 R7 R8 R9 R10 R11 R12 R13 R14 R15 R16 R17 6 R18 R19 R20 R21 R22 R23 R24 R25 R26 R27 R28 R29 R30 R31 R32 R33 R34
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R1 references R2 R3 1. Wimo A, Prince M. World Alzheimer Report 2010. London: Alzheimer’s Disease International, 2010. R4 2. Bharucha AJ, Anand V, Forlizzi J, Dew MA, Reynoalds CF, Stevens S, Wactlar H. Intelligent R5 Assistive Technology Applications to Dementia Care: Current Capabilities, Limitations and Future Challenges. American Journal of Geriatric Psychiatry. 2009;17(2):88-104. R6 3. Ott BR, Tate CA, Gordon NM, Heindel WC. Gender differences in the behavioral manifestations of Alzheimer’s disease. Journal of the American Geriatrics Society. R7 1996;44(5):583-7. R8 4. Folstein MF, Folstein SE, McHugh PR. Mini-mental state. A practical method for grading the cognitive state of patients for the clinician. Journal of psychiatric research. 1975;12 R9 (3):189-98. R10 5. Bamford C, Bruce E. Defining the outcomes of community care: the perspectives of older people with dementia and their carers. Ageing and Society. 2000;20(5):543-70. R11 6. van der Roest HG, Meiland FJ, Comijs HC, Derksen E, Jansen AP, van Hout HP, Jonker R12 C, Droës RM. What do community-dwelling people with dementia need? A survey of those who are known to care and welfare services. International Psychogeriatrics. R13 2009;21(5):949-65. 7. Sterns HL, Camp CJ. Applied gerontology. Applied Psychology. 1998;47(2):175-98. R14 8. Buettner LL, Ferrario J. Therapeutic recreation-nursing team: A therapeutic intervention R15 for nursing home residents with dementia. Therapeutic recreation news; 1997/1998 [cited 2012 June 6]; Available from: http://www.recreationtherapy.com/re-dem.htm. R16 9. Koger SM, Chapin K, Brotons M. Is music therapy an effective intervention for dementia? R17 A meta-analytic review of literature. Journal of Music Therapy. 1999;36(1):2-15. 10. Schreiner A, Yamamoto E, Shiotani H. Positive affect among nursing home residents R18 with Alzheimer’s dementia: the effect of recreational activity. Aging and Mental R19 Health. 2005;9(2):129-34. 11. Dupuis SL, Whyte C, Carson J, Sadler L, Meschino L. Liberating leisure from therapy. R20 Leisure Studies Association annual conference; Leeds, England.2010. R21 12. Lauriks S, Reinersmann A, van der Roest HG, Meiland FJ, Davies RJ, Moelaert F, Mulvenna MD, Nugent CD, Dröes RM. Review of ICT based services for identified R22 unmet needs in people with dementia. Aging Research Reviews. 2007;6(3):223-46. 13. Cahill S, Begley E, Faulkner JP, Hagen I. ‘’It gives me a sense of independence’’- R23 Findings from Ireland on the use and usefulness of assistive technology for people R24 with dementia. Technology and Disability. 2007;19(2-3):133-42. 14. Cahill S, Macijauskiene J, Nygård AM, Faulkner JP, Hagen I. Technology in dementia R25 care. Technology and Disability. 2007;19(2-3):55-60. R26 15. Nijhof N, van Gemert-Pijnen JEWC, Dohmen D, Seydel ER. Dementie en technologie. Een studie naar toepassingen van techniek in de zorg voor mensen met dementie en R27 hun mantelzorgers. Tijdschrift voor Gerontologie en Geriatrie. 2009;40(3):113-32. R28 16. Duff P, Dolphin C. Cost-benefit analysis of assisitive technology to support independence for people with dementia - Part 2: Results from employing the ENABLE cost- benefit R29 model in practice. Technology and Disability. 2007;19(2-3):79-90. R30 17. Topo P. Technology studies to meet the needs of people with dementia and their caregivers.A literature review. Journal of Applied Gerontology. 2009;28(1):5-37. R31 18. Astell AJ, Ellis M, Alm N, Dye J, Campbell J, Gowans G. Facilitating communication in dementia with multimedia technology. Brain and language. 2004;33(1):304-6. R32 R33 R34
176 19. Theng YL, Bin Dahlan A, Akmal ML, Myint TZ. An exploratory study on senior citizens’ perceptions of the Nintendo Wii: The case of Singapore. Icreat; April 22-26; Singapore: R1 ACM; 2009. R2 20. van Rijn H, van Hoof J, Stappers PJ. Designing leisure products for people with dementia: devloping ‘’the Chitchatters’’ game. American Journal of Alzheimer’s Disease & Other R3 Dementias. 2010;25(1):74-89. R4 21. Genoe R, Dupuis SL. The role of leisure within dementia context. Dementia. 2012. 22. Koene M. Vragenderwijs Blauw deel 2. Grou, The Netherlands [cited 2012 June 6]; R5 Available from: http://www.michelkoene.nl/produkt/41590000/Vragenderwijs_ R6 Blauw_deel_2.htm. 23. Catwell L, Sheikh A. Evaluating eHealth Interventions: The Need for Continuous R7 Systemic Evaluation. PLoS Med. 2009;6(8). 24. Yusof MM, Kuljis J, Papazafeiropoulou A, Stergioulas LK. An evaluation framework for R8 health information systems: human, organization and technology-fit factors (HOT-fit). R9 International Journal of Medical Informatics. 2008;77(6):386-98. 25. Pagliari C. Design and evaluation in eHealth: Challenges and implications for an R10 interdisciplinary field. Journal of Medical Internet Research. 2007;9(2). R11 26. Kaufman D, Roberts WD, Merrill J, Lai TY, S. B. Applying an evaluation framework for health information system design, development, and implementation. Nurse R12 Researcher. 2006;55(1). R13 27. Van der Meijden MJ, Tange HJ, J. T, Hasman A. Determinants of success of inpatient clinical information systems: a literature review. Journal of the American Medical R14 Informatics Association. 2003;10(3):235-43. 28. Lunsman M, McFadden SH, Andel R, editors. Comparative analysis and interrater R15 reliability of the Oshkosh Social Behaviors Scale for dementia patients. Gerontological R16 Society of America; 2007; San Francisco, California. 29. McFadden SH, Lunsman M. Continuity in the midst of change: Behaviors of residents R17 relocated from a nursing home environment to small households. American Journal of R18 Alzheimer’s Disease and Other Dementias. 2010;25(1):51-7. 6 30. Kinney JM, Rentz CA. Observed well-being among individuals with dementia: Memories R19 in the Making, an art program, versus other structures activity. Journal of Alzheimer R20 Disease and Other Dementias. 2005;20(4):220-7. 31. Nielsen J. Usability engineering. San Francisco: Morgen Kaufmann; 1993. R21 32. Kushniruk AW, Patel VL. Cognitive and usability engineering methods for the evaluation R22 of clinical information systems. Journal of Biomedical Informatics. 2004;37(1):56-76. 33. Akins RB, Tolson H, Cole BR. Stability of response characteristics of a Delphi panel: R23 application of bootstrap data expansion. BMC Medical Research Methodology. 2005;5(37). R24 34. Teknomo K. Bootstrap Sampling Numerical Example. 2006 [cited 2012 June 20]; R25 Available from: http://people.revoledu.com/kardi/tutorial/Bootstrap/examples.htm. 35. Linden A, Adams JL, Roberts N. Evaluating disease management program effectiveness: R26 an introduction to the bootstrap technique. Disease management & health outcomes. R27 2005;13(3):159-67. 36. Edgington ES. Randomization tests. New York: Dekker; 1996. R28 37. Good P. Permutation tests: a practical guide for resampling methods for testing R29 hypotheses New York: Springer-Verlag; 2000. 38. Orpwood R, Gibbs C, Adlam T, Faulkner R, Meegahawatte D. The design of smart homes R30 for people with dementia-user interface aspects. Universal Access in the Information R31 Society. 2005;4(2):156-64. R32 R33 R34
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39. Maetzel A, Strand V, Tugwell P, Wells G, Bombardier C. Economic comparison R1 of Leflunomide and Methotrexate in patients with rheumatoid arthritis. R2 Pharmacoeconomics 2002;20(1):61-70. 40. Peris F, Martinez E, Badia X, Brosa M. Iatrogenic cost factors incorporating mild and R3 moderate adverse events in the economic comparison of Aceclofenac and other R4 NSAIDs. Pharmacoeconomics. 2001;19(7):779-90. 41. Neymark N, Adriaenssen I, Gorlia T, Caleo S, Bolla M, Brochon D. Cost-effectiveness R5 of the addition of early hormonal therapy in locally advanced prostate cancer: results R6 decisively determined by the cut-off time point chosen for the analysis. European Journal of Cancer 2001;37(14):1768-74. R7 42. Chen M, Kianifard F. A nonparametric procedure associated with a clinically meaningful efficacy measure. Biostatistics. 2000;1(3):293-8. R8 43. Bredell H, Crookes RL, Heynes dPA, Schoub BD, Morris L. Molecular investigation of R9 two possible cases of accidental HIV-1 transmission in South Africa. AIDS Research Human Retroviruses. 2003;19(7):613-7. R10 44. Henderson AR. The bootstrap: a technique for data-driven statistics. Using computer R11 intensive analyses to explore experimental data. Clinica Chimica Acta. 2005;359 (1-2):1-26. R12 R13 R14 R15 R16 R17 R18 R19 R20 R21 R22 R23 R24 R25 R26 R27 R28 R29 R30 R31 R32 R33 R34
178 chapter 7 conclusions and discussion Chapter 7
R1 R2 R3 R4 R5 R6 R7 R8 R9 R10 R11 R12 R13 R14 R15 R16 R17 R18 R19 R20 R21 R22 R23 R24 R25 R26 R27 R28 R29 R30 R31 R32 R33 R34
180 conclusions and discussion R1 R2 The goal of this dissertation is to present the implications of developing and R3 implementing eHealth for people with dementia in home-based and residential care R4 with a focus on technology used to monitor patients and improve their social contact. R5 The research questions of this dissertation focus on the use of eHealth technologies R6 in dementia care, the implementation of eHealth in practice, its uptake and impact, R7 as well as the implications of developing eHealth and implementing it for patients R8 with dementia, as mentioned above. R9 R10 The introduction of this dissertation illustrated the growing number and cost of people R11 with dementia, both worldwide and specifically in the Netherlands. Furthermore, R12 there is a changing healthcare structure, with fewer people working in the healthcare R13 sector, but more people to care for. eHealth might be one of the approaches which R14 are required to meet the demands upon formal and informal care systems in the R15 future. There is a lack of scientific evidence in the field of eHealth for people with R16 dementia and many eHealth technologies in general are not doing well in providing R17 sustainable innovations in healthcare practices. R18 R19 In this dissertation our focus was on the operationalization and summative evaluation R20 of the use of eHealth technologies for people with dementia, in people’s own homes 7 R21 and in residential care. We followed the CeHRes roadmap to guide the evaluation R22 process (1). We used a literature review and four case studies to answer our research R23 questions. For the operationalization phase we looked into the implementation of R24 the eHealth technology used. For the summative evaluation we looked into uptake: R25 usage and usability, and impact: well-being for people with dementia and their family R26 caregivers, healthcare delivery and cost savings. R27 R28 In this section of the Conclusions and Discussion we will comment on the findings with R29 respect to the research questions, describe similarities and differences with existing R30 literature and give implications for the use of eHealth in dementia care. Hereby we R31 follow the research questions related to implementation, uptake and impact. In R32 R33 R34
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R1 the discussion we will comment on the methods used, and on the strengths and R2 limitations of this research. The research we have done in this dissertation creates R3 new research questions for the future, which will be described at the end of this R4 chapter as well. R5 R6 conclusions R7 R8 In this dissertation we investigated the type of technologies that were generally R9 used in dementia care. From the literature review in chapter 2, it appeared that the R10 impact of the technologies used has not been studied extensively. The technologies R11 can be divided into signalling, monitoring and social contact technologies (Research R12 question 1). The scientific evidence of technology related to social contact and R13 monitoring is especially rare. There are more practical descriptions for these kinds R14 of technologies, than scientific studies. But still the preliminary results out of the R15 literature review for these two categories of technologies look promising in relation R16 to patients’ quality of life and patients’ behaviour. This is also the reason why this R17 dissertation focused on monitoring and social contact technology. R18 R19 The findings of this dissertation can be applied to monitoring and social contact R20 technologies used for people with dementia. However, the findings, implications R21 and recommendations might even be useful for the use of signalling technologies R22 for people with dementia or the use of eHealth more generally for groups other R23 than those consisting of people with dementia. The monitoring technologies might R24 also be useful for people with other cognitive impairments and the social contact R25 technologies might be useful for people with other (not) congenital cognitive R26 impairments or for elderly and vulnerable people. The monitoring technologies R27 create a feeling of safety and the social contact technologies create structure during R28 the day or alternatively could be used to reduce loneliness. R29 R30 R31 R32 R33 R34
182 implementation: barriers and facilitators R1 Empirical research R2 In three studies (chapters 3, 4 and 5) the activities that were carried out for the R3 implementation of eHealth were also evaluated. In all of these studies improvements R4 in this implementation phase were recognized. R5 R6 The problems as seen in the studies were related to changes in the project groups, R7 a lack of internal communication about the project within the organization, a lack of R8 good training for professional caregivers, no direct link with the care coordination R9 and organization (so the eHealth technologies were not embedded in the daily care R10 routines) and a top-down approach instead of taking along the family or professional R11 caregivers right from the start (Research question 2). R12 No difference in home-based/residential care or monitoring/social contact R13 technology was observed. R14 R15 Literature R16 Mair et al. (2) carried out a literature review of sixty-six review papers related to R17 barriers against, and facilitators of, the implementation of eHealth. The key barriers R18 included inadequate information management, inadequate inter-agency cooperation, R19 intrusive technology/rigidity of the system, cost, and the absence of any of testing R20 systems. The key facilitators for eHealth included positive inter-agency co-operation, 7 R21 flexibility, ease of use, organizational willingness and ability to order information. In R22 other studies the following suggestions are given for the implementation of eHealth: R23 see the patient as a person, the product as a service, and ensure that the service R24 is validated by the person (3). But also create staff involvement and commitment, R25 human resources, organizational structure, intra-organizational networks and extra- R26 organizational networks (4). There is a narrow focus on the implementation of eHealth, R27 with little attention paid, or interest given, to the impact of new eHealth technologies R28 on the workload, inter-professional relationships, and the communication between R29 caregivers and patients (5). Broens et al. named five categories which influence R30 the implementation of an eHealth technology: technology, acceptance, financing, R31 organization, and policy and legislation (6). R32 R33 R34
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R1 These afore mentioned results in the studies related to implementation show R2 similarities with the results of our research. Even though all of these studies relate to R3 eHealth, and not specifically to use by people with dementia, the implementation of R4 eHealth has the same issues as it does for people with dementia. Examples include R5 the development together with the end-users or embedding eHealth in the daily care R6 practice routine. R7 R8 Implications R9 Implementation plays a major role in determining the success of an eHealth R10 technology. Implementation influences the uptake and impact of an eHealth R11 technology. As mentioned in our introduction as well, there is a proven relationship R12 between the sustainability of an eHealth technology in a healthcare setting and R13 its implementation (5) (chapter 1). A well-organized implementation process was R14 missing in the studies included in this dissertation, which will be the reason for lower R15 uptake and less impact. R16 R17 First of all, it is important to have an active project group with all of the stakeholders R18 involved from the outset, that is: from the family/professional caregiver to the R19 people with dementia, to the policymakers themselves. These project groups should R20 be involved right from the start, receive time to spend on the project, and should be R21 communicating regularly with the rest of the healthcare organization (chapter 3, 4 R22 and 5). R23 R24 Secondly, there is no need to embed eHealth in the daily care routine right from the R25 start of the project, because users have to be given enough time to get used to the R26 technology as well. However, there should eventually be a focus on the changes that R27 eHealth will bring to the daily care routine. If the technology is more frequently used, R28 a detailed analysis should be carried out of how these daily care processes should be R29 changed (chapters 3-6). R30 R31 Consequently, for the implementation phase it is important to let people get used R32 to the technology (give them the time and proper training for this as well), let the R33 R34
184 innovation diffuse itself within the organization (7). After that, create changes in the R1 daily care routine and with that look for a business model which might be interesting. R2 This business model could focus on different factors such as: more efficiency in R3 the night care with fewer people working, video contact instead of house visits, R4 postponing the moment of an intake to a nursing home, etc. (chapter 3). With this R5 daily process change and business model, more cost savings might be generated. R6 This is interesting for the organizations that have to pay, the third parties, such as R7 the Dutch Healthcare Authority (NZA). They will become interested if the eHealth R8 technology definitely generates cost savings. R9 R10 Another and final subject which is not always taken into account with eHealth R11 technologies, but nevertheless has a lot to do with embedding eHealth into the daily R12 care routine, involves the ethical issues. For ADLife, the family caregivers wanted to R13 have more insight into their relative’s data, although the professional caregivers did R14 say that this was linked to the privacy of the patient (chapter 3). It is wise to think R15 about these issues early on in the implementation phase and not when a specific R16 situation might occur (8). R17 R18 Uptake R19 Empirical research R20 Monitoring technologies (chapters 3 and 4) prescribe a certain usage, active or 7 R21 passive, depending on the user. The person with dementia is a passive user, only R22 having the technology in their home or around their wrist in our studies. The R23 professional caregiver has to analyze the data of the monitoring technology. This R24 analysis of the data was carried out differently in the two studies, every day and R25 twice a week. For the ‘technology used on a daily basis’ an intended usage was given, R26 but for the ‘technology used twice a week’ no intended usage was given. R27 R28 Social contact technologies (chapters 5 and 6) require active usage by the people R29 with dementia themselves, but this usage is different for every person, depending on R30 their gender, MMSE and personality. R31 R32 R33 R34
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R1 Apart from the difference between individuals for the actual usage, the not given R2 intended usage also creates differences in actual usage. R3 R4 In relation to the usability of the eHealth technology, all of the technologies received R5 several suggestions and comments about user-friendliness (chapters 3-6). The user- R6 friendliness could be improved because the technologies used were not tailored R7 from the mindset of people with dementia (cognitively impaired) or their caregivers R8 (not used to working with technologies) and should be more tailor-made to the R9 individual (because every person with dementia is different). The technology was R10 also still prone to too many glitches (Research question 3). R11 R12 Literature research R13 In the existing literature, no research was found about the actual usage of eHealth R14 technology by people with dementia, although there is some literature in the field of R15 actual usage of eHealth for other patients, which is in turn mostly related to internet R16 technologies. For internet technologies in the healthcare sector, it can be seen that R17 the actual usage is much lower than the intended usage. They offer two solutions R18 for this: create an attitude towards unintended use in relation to further valuable R19 adoption and support the use of the service, instead of only the e-service (9). For a R20 web-based, disease management programme for supporting the self-care of diabetes R21 patients the technology was hampered by low enrolment and non-usage attrition. R22 The main barriers were poor user-friendliness, absence of push factors (prompts), R23 and selection of the ‘wrong’ users. The solutions given in this study were as follows: R24 avoid selective enrolment, make use of participatory design, and develop persuasive R25 technology (10). R26 R27 These internet technologies are not totally comparable to the technologies used in R28 our study. In our study we used devices instead of internet technologies, but non- R29 user-friendliness was mentioned by the people with dementia themselves as well as R30 by the caregivers. Push factors were not specifically mentioned in our projects, but R31 for people with dementia you have to create specific reminders, because of their R32 cognitive abilities. The caregivers received instructions for one project about how R33 R34
186 often to use the technology, which were followed. For people with dementia no real R1 instructions were given and if this was the case (such as: put on PAL4 every morning) R2 this did not always work for this specific group of people because of their cognitive R3 abilities. Reminders should be given several times and in an easy and clear way. R4 R5 The differences we found in our study between the actual usage in relation to gender, R6 MMSE and personality were not found in other studies for people with dementia and R7 the use of eHealth technologies. R8 R9 As mentioned above, in our studies the technologies used are not always user- R10 friendly, but in Lauriks’ et al. review the technologies seem to be easy to use (11). A R11 possible reason for this is that most of the technologies in Lauriks’ et al. study were R12 not commercially available technologies, but rather research technologies, whereby R13 the phase of contextual inquiry - and so the development of the technology - was R14 done together with the end-users, because these technologies were developed R15 during the research period. R16 R17 On the other hand, comparable with other commercially available technologies, R18 our studies showed positive results in relation to the usability, for example the R19 measurement and improvement of the sleep and wake patterns of a person with R20 dementia. In our study (chapter 4), we showed positive results, but in another study 7 R21 in which they used motion sensors, bed mat and bed sensors it was much more R22 difficult to measure, because people with dementia get in and out of their bed. Even R23 if people were in their bed it was hard to ensure that a person was asleep (12). R24 The IST Vivago watch is definitely an improvement in contrast with these sensor R25 technologies, although not all people with dementia prefer to have something to R26 wear like a watch. R27 R28 The possibility of creating heuristics to choose from for an eHealth technology for R29 people with dementia is also mentioned by Kinney et al. (13), in which the caregivers R30 are concerned about fine-tuning the technology to the personal wishes of the person R31 with dementia. R32 R33 R34
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R1 As mentioned in our studies as well, most technologies do have glitches, which is R2 common in other studies as well: in a project in a residential care setting the technical R3 staff had to work 12 to 16 hours each week to solve bottlenecks with the technology R4 (14). R5 R6 Implications R7 The uptake related to usage can be increased by describing the intended usage, R8 users and context of usage (home/residential) of the monitoring and social contact R9 technologies. The uptake related to usability can be created to match the technology R10 with the users’ needs, which creates more user-friendly eHealth technologies. R11 This should all be done in the contextual inquiry and implementation phase R12 (operationalization) of an eHealth technology (see CeHRes roadmap). R13 R14 In all of the four studies (chapters 3-6) there was no match between the needs of R15 the people using the technologies. These needs were not recognized during the R16 development of the technologies, for example: the watch which was used did not R17 work well with the fragile arms of an older person. R18 R19 First of all, because the needs are so different from those for ‘usual seniors’ it is hard R20 for a healthy person to imagine how a person with dementia sees the world. R21 Secondly, it is also hard from the perspective of validity to ask people with dementia R22 directly (especially in the more severe stage of dementia) what they feel and think R23 about general things and the fact that all people with dementia have different wishes R24 and needs. But even though it is hard to get a clear and real life view of the lives R25 of people with dementia, it is important to attempt to do so in order to strive for R26 the eHealth technologies to be worthwhile. This could be done by observations or R27 through interviews with the family caregivers if people are in a more severe stage R28 of dementia. If people are in the initial phase of dementia it is possible to ask them R29 about their needs themselves most of the time. R30 R31 The needs of Roest et al. (15) might be of assistance, but we have to think about how R32 to integrate these needs in technology (chapter 1). These needs, which are related to R33 R34
188 the domains of memory, information, company, psychological distress and daytime R1 activities, need to be analyzed more. So for the need ‘company’, what exactly do the R2 people with dementia want in relation to company? Do they want a real life visit or R3 is the possibility of talking to someone (even if it is through a video contact) enough? R4 Or do they want both of them? If so, in what frequencies? All these details need to be R5 explored in more detail through interviews with people with dementia themselves or R6 their family caregivers, before the technology can play any sort of meaningful role. R7 R8 Furthermore, the wishes and needs of people with dementia differ from individual R9 to individual and because it is commercially-wise not possible to create an individual R10 eHealth technology for every person separately, it would be wise to create heuristics R11 to choose from, in short: a people-centred and flexible eHealth technology. For PAL4, R12 for example, in the newest version the possibility to choose three different sorts of R13 agendas was included: a daily agenda till 3 pm (after that it refreshes itself for the R14 appointments after 3pm), a daily agenda in total, and a week agenda (chapter 5). R15 R16 Next to this more in-depth analysis of the needs of the end-users, it is also important R17 to let people know the possibilities of today’s cutting edge technology. Elderly people R18 with dementia today are unaware of all these possibilities. The danger is that if a R19 person with dementia is asked whether he or she would like to use technology R20 for some of their needs, they do not have the slightest clue of the possibilities. 7 R21 Therefore, scenarios and possibilities should be explained and showed to the person R22 with dementia to give him or her a good overview (chapter 3 and 5). R23 R24 Family caregivers who are closely related to people with dementia have to be R25 included in this contextual inquiry as well. For example, for the ADLife system all R26 of them said that the monitoring system should be expanded to monitoring and R27 signalling situations (in other words, the system should also generate an alarm when R28 someone falls down), which would make them feel more safe. R29 People with dementia and family caregivers are not the only users of the technology; R30 the professional caregivers also use it. These professional caregivers are familiar with R31 all the ins and outs of caring for people, but not about working with technology or R32 R33 R34
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R1 even more specifically eHealth technologies. Data as shown on a webpage of ADLife R2 might be easy for a technician to understand, but not necessarily for the professional R3 caregiver (chapter 3). R4 R5 Overall, it is important, right from the start, to involve the end-users in the choice R6 or design of a specific eHealth technology. After that has been accomplished, the R7 intended usage for every technology should be thought about carefully, together R8 with the users and the context of its use, because this is very different for every R9 technology; there are no straight-forward rules for this. R10 R11 impact related to well-being R12 Empirical research R13 In this dissertation we use a broad definition of the well-being of people with R14 dementia; it could be all sorts of good or satisfactory conditions of existence (16) R15 because the eHealth technologies have different purposes in relation to well- R16 being, ranging from feelings of safety and security, social contact, and sleeping, to R17 supportiveness in their daily life. R18 R19 Firstly, focus on the well-being of the people with dementia themselves. For R20 monitoring technology (chapters 3 and 4), improvements for well-being are in R21 relation to the health status of people with dementia or to creating a feeling of safety R22 and security. But this feeling is only for the people with dementia who are aware of R23 the monitoring technology in their home, for example if people with dementia still R24 know after a few days or weeks that there were sensors in their house registering R25 their patterns. After the installation, most people forgot that these sensors were in R26 their homes. R27 R28 For social contact technology (chapters 5 and 6) improvements are observed in R29 relation to social behaviour, a feeling of safety, and pleasure for the people with R30 dementia. For example, by playing the memory games on PAL4, using the agenda, or R31 making video contact with family caregivers. R32 R33 R34
190 Although not quantitatively proven nevertheless, according to the caregivers R1 (qualitatively proven), the technologies used in home care also make it possible for R2 people to live at home for a longer period of time. R3 R4 Secondly, we looked at the well-being of family caregivers. In residential care, R5 technology cannot really fulfil the needs of the family caregiver in relation to their R6 own well-being, because the technology is purely used for the person with dementia R7 or to provide support to the professional caregiver. In a homecare setting, the R8 monitoring technology (chapter 3) created a feeling of safety and security while the R9 social contact technology (chapter 5) created support for the family caregiver. But R10 the family caregivers also mentioned the fact that the eHealth technology did not R11 decrease the burden for them: they still had to do the laundry, grocery shopping or R12 take care of the financial administration for their sick relative, which takes up a lot of R13 effort and time (research question 4). R14 R15 Literature research R16 For the impact related to well-being, the positive results in our study correlate with R17 the findings of other studies (11, 17) and with our own literature review results R18 (18) in which social contact technologies were liked by people with dementia and R19 were supportive for caregivers. For the monitoring technologies, we found that they R20 increased the sense of safety and reduced feelings of fear and anxiety for people with 7 R21 dementia and their family caregivers. R22 R23 In our studies there was supportiveness for the family caregiver, but no reduced R24 burden. In a study where family caregivers of dementia patients could use a R25 technology-based psycho-educational intervention, a significant decrease in this R26 burden was observed (19). In another study, no significant differences were found R27 for burden, depression, coping, quality of life, knowledge and satisfaction after the R28 use of a screen-phone to support and educate caregivers (20). These studies and R29 technologies were used directly for the support of caregivers, for the studies related R30 to the needs and daily life of people with dementia no proved significant decrease of R31 burden was found for the caregiver. R32 R33 R34
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R1 As also mentioned in this study, it is quite hard to quantitatively prove that someone R2 can live at home for a longer period of time through the use of eHealth. In a study with R3 a monitoring and signalling eHealth technology, six out of the 18 people experienced R4 a delay or prevention in being taken into residential care by the system that was R5 used, for five persons a delay was not possible, and for the other persons there were R6 different reasons for their institutionalization (21). R7 R8 Implications R9 The positive impact of well-being for people with dementia and their family caregivers R10 was observed in the use of eHealth technologies, but could be expanded further. R11 R12 One of the possibilities to expand this impact is a match between the technology and R13 the needs of the users and a well-organized implementation process, as described R14 earlier. The last possibility to expand this impact on well-being is by focusing on the R15 phase of value specification from the CeHRes roadmap. R16 R17 In this dissertation we saw that, for most of the time, the reason for being taken R18 into residential care is because the patient becomes too much of a burden for the R19 caregiver (chapter 3). Unfortunately, the technologies used in this dissertation did R20 not reduce the burden on these family caregivers. The overall goal of eHealth is to R21 generate a higher quality of care, but with that it must also be cost-effective and this R22 can be created to enable people to continue living in their own homes for as long as R23 possible, so less burden should also be created instead of only supportiveness and R24 a feeling of safety as proved in this dissertation. These values should be specified R25 together with the stakeholders before designing and implementing the technology. R26 R27 The stakeholders could be the person with dementia himself, the family and R28 professional caregiver, the policymaker, the specialist in elderly care, etc. The values R29 of the stakeholders should be taken into account and given priority. In general, it R30 was stated in all the studies we did, which were pilot projects, that the healthcare R31 organization wanted to create cost savings and a better quality of life for the person R32 with dementia, so this has a high value and should also be included in the eHealth R33 technology used (value specification). R34
192 impact related to healthcare delivery R1 Empirical research R2 The monitoring technologies (chapters 3 and 4) generate the possibility to create R3 interventions as seen in our studies. It gives the professional caregivers an extra R4 sensory organ. For the social contact technologies (chapters 5 and 6), the healthcare R5 delivery is more in relation to supportiveness for the professional caregivers in their R6 work. For example, the Chitchatters generate subjects to talk about during activities R7 with people with dementia. R8 R9 For the residential care (chapters 4 and 6), the impact on healthcare delivery is in R10 relation to night shifts or efficiency in the work (with the support of eHealth). In the R11 homecare (chapters 3 and 5) the impact on healthcare delivery is more in relation R12 to creating more independence for the person with dementia, more support for R13 the family caregiver, and some efficiency possibilities in the work of professional R14 caregivers (for example, making video contact instead of a house visit). R15 The eHealth technologies that were used could all have their impact on healthcare R16 delivery in the participating healthcare organization. Not all of the participating R17 healthcare organizations have embedded the technologies totally in the organization R18 of their daily care routine, so the impact differs for every organization, not only R19 in terms of the degree of the impact, but also on how the impact is experienced R20 (research question 4). 7 R21 R22 Literature research R23 The results in this dissertation relating to healthcare delivery correlate with findings in R24 other studies (11, 18) where interventions, where started by monitoring technologies R25 and social contact technologies to create support in the work of professional R26 caregivers. The fact that eHealth is not embedded in the routine practice of daily R27 care, is also indirectly seen in a study where they used motion sensors in a nursing R28 home. The professional caregivers mentioned that the workload and stress increased, R29 because there was a lot more to deal with during working hours (22). If the eHealth R30 technology that was used had been embedded into the routine practice of daily care R31 this would not have been the case. In this sense, eHealth should create some support R32 for their work instead of extra work. In another study there was no positive and R33 R34
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R1 no negative effect on the workload of the caregiver (23). In this dissertation small R2 changes could be seen, some house visits were done by video contact for example. R3 So this study shows that changes in the healthcare delivery are possible, but again R4 embedding in daily care practice is necessary to expand this impact. R5 R6 Implications R7 eHealth technologies create possibilities for efficiency in healthcare delivery. But R8 the possibility to create just-in-time care instead of just-in-case care is still not fully R9 used, which is also a consequence of the fact that the professional caregivers are R10 not used to working with these kinds of technologies and do not know how to R11 interpret the data or let the technology support them in their work and make care R12 decisions from the things they see at a patients’ room or home, together with the R13 technology (chapters 3-6). The possible solution for this lies in the points described R14 for the development and implementation for embedding the eHealth technology in R15 the routine daily practice of care. R16 R17 impact related to cost savings R18 Empirical research R19 The costs savings investigated in this dissertation are created by letting someone live R20 at home for as long as possible instead of having them taken into residential care. R21 R22 Compared to staying in residential care, for 10 clients living at home with ADLife for R23 duration of two months, the savings were €23,665, while for 50 clients the savings R24 were €124,122 (chapter 3). For 10 clients living at home with PAL4 for one month R25 longer, instead of in residential care, the savings were €8237, while for 50 clients R26 this was €43,187 of savings (chapter 5). Therefore, cost savings can be created by R27 postponing the moment of intake into a nursing home through the use of supportive R28 eHealth technologies. The breakeven point is for both of the technologies around R29 the €5000 for home care and next to that the use of the technology. So if a person R30 is getting more severe dementia and also has to receive higher levels of care, it will R31 finally turn out to be more cost-effective to let someone go into residential care R32 (chapters 3 and 5). R33 R34
194 Not in this dissertation, and in no other single scientific study carried out so far, it R1 has been quantitatively proven that someone is definitely able to live at home for a R2 longer period of time through the use of technology. In this dissertation professional R3 and family caregivers believed that it would be possible and, as mentioned in other R4 studies, people with dementia themselves also prefer to stay at home for as long as R5 possible (24) (research question 4). R6 R7 Literature research R8 Other studies related to cost savings show different kinds of results; in one study, R9 admitting a person into residential care was cheaper than providing home-based care, R10 which often involved frequent and costly visits to the person’s home (13). Another R11 study showed positive results in relation to our study; a saving of 1.5 million pounds R12 was found in comparison with a control group (173 people in control group and 233 R13 people in the intervention group for 21 months), because admission into residential R14 care, a hospice or hospital could be delayed (25). But there will be a breakeven point, R15 when living in residential care might be more cost-effective, in a study where they R16 used a signalling and monitoring technology, people with dementia were able to stay R17 at home, but the caregivers had to come by eight or nine times a day, which is very R18 expensive (21). R19 R20 Implications 7 R21 Cost savings can be generated by using eHealth for people with dementia. In relation R22 to the cost savings, which is a major point for the Dutch Healthcare Authority and R23 with that the Healthcare insurances, the cost savings as shown in this dissertation R24 have already been used by ‘Zorgverzekeraars Nederland’ (the Dutch association of R25 health insurers) for a more in-depth study about these costs in relation to the cost R26 components they have concerning dementia-related health care. In the study, the R27 aim was to provide third party payers (the party besides the patient and the health R28 care provider that is concerned with the payment of healthcare) with a methodology R29 to conduct economic analyses (EAs) facilitated by an economic model (EM) for the R30 procurement of technological interventions. In this study, dementia and ADLife R31 were used as a case study illustration of the proposed methodology. In this study, R32 R33 R34
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R1 different groups of people with dementia were formulated: diagnosis, domestic R2 support, domestic care and nursing home care. Scenarios were also formulated such R3 as ‘Implementation in Domestic Support phase, Maximum Delay, Best Case Scenario’ R4 (with ‘delay’ was meant no intake in a nursing home and with ‘best case’ that the R5 technology life span was 5 years, data could be read by 30 people and with a complete R6 cost reduction in hospital care, extramural care and intramural care). A model was R7 built and, for the ADLife case study which was used, the model showed positive R8 results again. This model was different to our model, because we used specific clients R9 details about the costs of homecare and in this model national numbers were used R10 for the costs of dementia care. Also in this study depreciation and different scenarios R11 were tested, which was not the case in our study. ADLife had the ability to improve R12 the efficiency in the delivery of care at home, with maximum possible savings of R13 up to €118,606 (for the period the person receives care) when the technology was R14 implemented in the Domestic Support phase and €89,694 when the technology was R15 implemented in the Domestic Care phase. The worst case scenarios showed that R16 when ADLife was implemented in the Domestic Support phase, cost savings of 9% R17 made the implementation of ADLife break even with the costs of current care. When R18 ADLife was implemented in the Domestic Care phase these costs savings needed to R19 be 7%. This means that if the current care is €242, the care with technology is €266, R20 there will need to be a saving of €25 in the care to allow the technology to be more R21 cost-efficient. In percentages this is (266-242)/242 = 0.09 (26). R22 R23 In our study we did not directly use the groups of diagnosis, domestic support, etc. R24 as Vermeulen et al. did (26). We did, however, use the MMSE score in three out of R25 the four studies (chapters 3, 5 and 6), but this score will not exactly correlate with R26 these groups, a person with a low MMSE score, so more severe dementia, might R27 still be in the domestic support phase, because of a lot of help from a partner. The R28 studies which we have done in residential care correlate with the nursing home or R29 domestic care (people coming to the day-care centre of the healthcare organization, R30 but still living at home). The studies we have done in the homecare correlate with R31 domestic support (for social contact technology) and domestic care (for monitoring R32 technology). As seen in this dissertation, the use of the technology has a lot to do R33 R34
196 with the personality, gender and MMSE of the person with dementia (chapters 5 and R1 6), so combining these details with these groups will be useful for further research R2 to make a correlation between the technology and the group in which a person with R3 dementia is in and for whom the technology will work and for whom it will not, so R4 this can be related to possible cost savings as well. R5 R6 Overall, the Dutch healthcare system does not have an adequate finance structure R7 nowadays to create a more structural way of funding for eHealth technologies for R8 people with dementia. The financial aids are well-organized in the Netherlands R9 in comparison with other countries, but the structural finance is more harsh. The R10 healthcare organization that is making the investment does not always get a return R11 on this investment. Homecare in the Netherlands is financed by the so-called AWBZ R12 (Exceptional Medical Expenses Act), but an intake into residential care is paid by the R13 Dutch Health Insurances, so if an intake into a residential care home is delayed this R14 will benefit the Healthcare Insurance. But nowadays the investment for the eHealth R15 technologies comes from the homecare organizations and thus the AWBZ. This might R16 change in the future, but this dissertation describes the situation nowadays. R17 R18 Overall, more in-depth research into the possible cost savings is necessary, whereby R19 the model of Vermeulen et al. (2012) could be useful in new studies (26). R20 7 R21 discussion R22 R23 methods R24 The methods used in this dissertation were always a mixed method design, soa R25 combination of qualitative and quantitative methods; one of the best methods to R26 evaluate eHealth technologies (27-31). Interviews, observations, focus groups and R27 diaries were the qualitative methods and the analysis of the monitoring data, log files R28 and cost analysis were the quantitative methods. These methods were also linked R29 with each other, so if the interviews about using the IST Vivago watch showed us R30 that the professional caregivers changed a specific medication, the monitoring data R31 from the watch could be used to see the impact of this on the sleep of that specific R32 person (chapter 4). R33 R34
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R1 In some cases, such as the monitoring data of the Watch, the collected data were R2 still pretty small (chapter 4) and for the ADLife data we did not look in detail into the R3 red, yellow and green alarms and taken actions (chapter 3). And for PAL4, the log files R4 were not as detailed as we had initially wanted. Consequently, we could only see the R5 number of clicks people made and not, for example, the time they spent on a specific R6 button (chapter 5). For the Chitchatters, we used the Oshkosh behaviour scale, but R7 we did change this scale for our specific study, which might have produced a bias R8 and we used bootstrapping because of the small sample size (chapter 6). Overall, R9 the quantitative analysis still gave enough insight into the uptake and impact of the R10 eHealth technology. R11 R12 For the interviews, we always talked to the professional and family caregivers and R13 not to the patients with dementia themselves. Although the thoughts and needs will R14 be different for these groups (caregiver or patient) (15, 32-35). For the interviews R15 with family caregivers from the participants of PAL4 and ADLife (chapters 3 and 5), R16 some clients themselves were there when the interview took place, so the comments R17 they made were included in the transcripts of the interviews. It would have been R18 preferable to include interviews with people with dementia as well, but new methods R19 should be developed on how to do this in an efficient and reliable way. At the outset R20 of this dissertation we did interviews with people with dementia themselves about R21 their expectations of the technology, however, they did not answer the questions, R22 but instead started talking about the grocery shopping, for example. This is probably R23 due to the symptoms of dementia, but also because of the totally new use ofa R24 technology; one which this generation of people with dementia is not used to. R25 For the recruitment of clients for the different projects, we did not randomly choose R26 the clients. The clients were recruited by the professional caregivers who knew the R27 clients. If the professional caregivers thought that the client would be capable of R28 using the technology, or for the monitoring technology would have profited from the R29 technology, and they and their family caregivers wanted to join the project, then they R30 were included. We did this because the projects were all small and in small districts R31 or residential cares, so we did not have the possibility to randomly choose the clients. R32 R33 R34
198 With that we did not have a control and intervention group as well, because of the R1 small size of the sample, but also because of the difficulty to make a comparison R2 between one dementia client and another one. This dissertation intended to give R3 insights into the implementation, uptake and impact of the use of eHealth for people R4 with dementia, so we decided that this way of doing research gave us enough details. R5 In research into eHealth technologies it is all about the research of the whole process R6 and not about testing only the effects of one intervention, as for example is done R7 in medication research, where control and intervention groups are often used (36). R8 R9 strengths and limitations R10 Firstly, when examining the strengths of this dissertation, one of its main qualities R11 is the empirical aspect. In this dissertation, commercially available systems have R12 been used in order to evaluate them; the main advantage is that other healthcare R13 organizations around the world could easily use the same eHealth technologies and R14 learn a lot from the main findings of the current research. R15 R16 Moreover, the research carried out in the field of eHealth for people with dementia R17 is minimal, so the research done for this dissertation helps to fill this research gap. R18 Alongside the practical and scientific added value, the topic of this dissertation fits R19 in with current developments within today’s healthcare system. There are an ever R20 increasing number of elderly and chronically ill people, but fewer people to care for 7 R21 them, so there is a need for change and eHealth could play a supportive role in this. R22 R23 The healthcare organizations are looking for recommendations to implement eHealth R24 for people with dementia and this dissertation provides such recommendations. R25 R26 On the other hand, when we look at the limitations; it was sometimes harder to R27 change some small aspects in the technology (29). If the technologies used were R28 research technologies, then this would have been easier. R29 R30 This dissertation gives a first impression of the use of eHealth for people with R31 dementia in home-based and residential care, but more research, especially with R32 R33 R34
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R1 larger groups of people, is necessary. Unfortunately for this dissertation, the eHealth R2 technologies used are still quite expensive, so they are less easy to apply for hundreds R3 of people with dementia. R4 R5 Furthermore, the cost analysis carried out in this research provides the first design R6 of a possible business model for people with dementia (chapters 3 and 5). However, R7 more detailed figures are necessary and, for example, the implementation costs R8 which play a major role in the cost analysis were not used in the cost analysis because R9 they differ too much for every organization separately and, next to that, these R10 implementation costs are one-time-only costs. R11 R12 Future research R13 A number of suggestions can be given for future research. The main track for R14 future research would be to create larger sample sizes for the research, so that the R15 conclusions can be made more quantitative and to create control and intervention R16 groups even in the future. If larger groups of respondents were created this would R17 make it possible to generate more statistics about someone who lives at home and R18 thereby increase the possibility of letting someone live at home for a longer period R19 of time by creating quantitative evidence for this. R20 R21 As mentioned earlier, it might also be interesting to include the views and opinions R22 of people with dementia themselves, although specific research techniques should R23 be used to create reliable results because of the cognitive impairment of people with R24 dementia. R25 R26 By collecting these opinions and views of people with dementia themselves, it R27 might be possible to create characteristics in type of dementia, age, gender, MMSE, R28 personality and groups like domestic care, domestic support, etc.(26) and determine R29 which individuals would respond well to a specific technology and which individuals R30 would not. R31 R32 R33 R34
200 In this dissertation we did not make a direct link between the needs of people with R1 dementia as mentioned in the introduction of this dissertation and the technology R2 itself. It would be interesting to focus on a specific need; for example, creating R3 daytime activities and trying to find a technology which could be a solution for this R4 and see whether the technology is really helpful or not. R5 R6 In addition, more insight is necessary in the cost analysis. The cost analysis done R7 in this research was preliminary, however more sophisticated details are necessary R8 about the costs that someone incurs at home for grocery shopping, rent, etc. Details R9 about the costs of the general practitioner would also be necessary, along with the R10 amount paid for the personal contribution for the care, etc. Vermeulen et al. made R11 the next first analysis with our data, but this is just the initial model; the real projects R12 should be included to test this model and possibly to complete this model further R13 (26). R14 R15 In this study we only looked at the impact of the technologies used for people with R16 dementia, yet the technologies could also be useful for people with other cognitive R17 impairments. Research into these groups, for example CVA patients, will also be R18 useful. R19 R20 Not only might different groups be useful, but also the use of different technologies, 7 R21 we focused on four technologies, but there are more new technologies these days, R22 also on different kind of hardware, for example mobile phones or tablets. The R23 usefulness of these technologies for people with dementia is interesting. R24 R25 Finally, we did not carry out any research in this dissertation that was specifically R26 related to the ethics of the use of technology for people with dementia. However, R27 this is an important issue for further research. This topic is named by the CeHRes R28 roadmap in the phase of value specification, whereby stakeholders are needed to R29 know the conditions, technical and ethical for employment of technologies for the R30 most vulnerable people. R31 R32 R33 R34
201 Chapter 7
R1 references R2 R3 1. Van Gemert-Pijnen JEWC, Nijland N, Ossebaard HC, van Limburg AH, Kelders SM, Eysenbach G, seydel ER. A holistic framework to improve the uptake and impact of R4 eHealth technologies. Journal of Medical Internet Research. 2011;13(4):e111. R5 2. Mair FS, May C, Finch T, Murray E, Anderson G, Sullivan F, O’Donnell C, Wallace P, Epstein O. Understanding the implementation and integration of e-health services. R6 Journal of Telemedicine and Telecare. 2007;13 (1):36-7. 3. Vitacca M, Mazzu M, Scalvini S. Socio-technical and organizational challenges to wider R7 e-Health implementation. Chronic Respiratory Disease. 2009;6(2):91-7. R8 4. Greenhalgh T, Robert G, Bate P, Kyriakidou O, Macfarlane F, Peacock R. How to Spread Good Ideas. A systematic review of the literature on diffusion, dissemination and R9 sustainability of innovations in health service delivery and organisation. London: NHS, R10 2004. 5. Mair FS, May C, Murray E, Finch T, Anderson G, O’Donnell C, Wallace P, Sullivan F. R11 Understanding the implementation and integration of e-Health Services. London, R12 2009. 6. Broens THF, Huis in ‘t Veld RMHA, Vollenbroek-Hutten MMR, Hermens HJ, van Halteren R13 AT, Nieuwenhuis LJM. Determinants of successful telemedicine implementations: a literature study. Journal of Telemedicine and Telecare. 2007;13(6):303-9. R14 7. Cain M, Mittman R. Diffusion of Innovation in Health Care. Oakland: California Health R15 Foundation, 2002. 8. Zwijsen SA, Niemeijer AR, Hertogh CMPM. Ethics of using assistive technology in the R16 care for community-dwelling elderly people: an overview of the literature. Aging and R17 Mental Health. 2011;15(4):419-27. 9. Westelius A, Edenius M. Gaps between intended and actual use- turning problems R18 into opportunities in health informatics. International Journal of Public Information R19 Systems. 2006;2(2):33-53. 10. Nijland N, van Gemert-Pijnen JEWC, Kelders SM, Brandenburg BJ, Seydel ER. Factors R20 Influencing the Use of a Web-Based Application for Supporting the Self-Care of Patients R21 with Type 2 Diabetes: A Longitudinal Study. Journal of Medical Internet Research. 2011;13(3). R22 11. Lauriks S, Reinersmann A, van der Roest HG, Meiland FJ, Davies RJ, Moelaert F, Mulvenna MD, Nugent CD, Dröes RM. Review of ICT based services for identified R23 unmet needs in people with dementia. Aging Research Reviews. 2007;6(3):223-46. R24 12. Vilans. Alzheimerwatcher. Vilans; 2006 [cited 2008 June 5]; Available from: http:// www.domoticawonenzorg.nl/smartsite.dws?id=103539. R25 13. Kinney JM, Kart CS, Murdoch LD, Ziemba TF. Challenges in caregiving and creative R26 solutions: using technology to facilitate caring for a relative with dementia. Ageing International. 2003;28(3):295-314. R27 14. Nouws H, Sanders L, Heuvelink J. Domotica voor dementerenden.De eerste ervaringen R28 in het Leo Polakhuis te Amsterdam en het Molenkwartier te Maassluis. Amersfoort: De Vijfde Dimensie; 2006. R29 15. van der Roest HG, Meiland FJ, Comijs HC, Derksen E, Jansen AP, van Hout HP, Jonker R30 C, Dröes RM. What do community-dwelling people with dementia need? A survey of those who are known to care and welfare services. International Psychogeriatrics. R31 2009;21(21):949-65. 16. Crisp R. Well being. Stanford: MetaPhysics Research Lab, Stanford University; 2008 R32 [cited 2012 August 30]; Available from: http://plato.stanford.edu/entries/well-being/. R33 R34
202 17. Sixsmith A. New technologies to support independent living and quality of life for people with dementia. Alzheimer’s Care Quarterly 2006;7(3):194-202. R1 18. Nijhof N, van Gemert-Pijnen JEWC, Dohmen D, Seydel ER. Dementie en technologie. R2 Een studie naar toepassingen van techniek in de zorg voor mensen met dementie en hun mantelzorgers. Tijdschrift voor Gerontologie en Geriatrie. 2009;40(3):113-32. R3 19. Finkel S, Czaja SJ, Schulz R, Martinovich Z, Harris C, Pezzuto D. E-Care: A R4 Telecommunications technology intervention for family caregivers of dementia patients. American Journal of Geriatric Psychiatry 2007;15(5):443-8. R5 20. Dang S, Remon N, Harris J, Malphurs J, Sandals L, Carbrera AL, Nedd N. Care R6 coordination assisites by technology for multiethnic caregivers of persons with dementia: a pilot clinical demonstration project on caregiver burden and depression. R7 Journal of Telemedicine and Telecare. 2008;14(8):443-7. 21. Van Hoof J, Kort HSM, Rutten PGS, Duijnstee MSH. Ageing-in-place with the use of R8 ambient intelligence technology: Perspectives of older users. International Journal of R9 Medical Informatics. 2011;80(5):310-31. 22. Engstrom M, Ljunggren B, Lindqvist R, Carlsson M. Staff perceptions of job satisfaction R10 and life situation before and 6 and 12 months after increased information technology R11 support in dementia care. Journal of Telemedicine and Telecare. 2005;11(6):304-9. 23. Lauriks S, Osté JP, Hertogh CMPM, Dröes RM. Effectenonderzoek naar de toepassing van R12 domotica in kleinschalige groepswoningen voor mensen met dementie. Amsterdam: R13 GGD, 2008. 24. Tinker A. Housing for elderly people. Reviews in Clinical Gerontology. 1997;7(2):171-6. R14 25. Woolham J. The effectiveness of assistive technology in supporting the independence of people with dementia. London: Hawker publications; 2006. R15 26. Vermeulen A, de Vries S, Nijhof N, van Gemert-Pijnen JEWC, Redekop K. A Methodology R16 for Reimbursing Health Technology through Economic Modelling: Derived from a Case Study Regarding Telehealth and Dementia. Rotterdam: Erasmus University; 2012. R17 27. Catwell L, Sheikh A. Evaluating eHealth Interventions: The Need for Continuous R18 Systemic Evaluation. PLoS Med. 2009;6(8). 28. Yusof MM, Kuljis J, Papazafeiropoulou A, Stergioulas LK. An evaluation framework for R19 health information systems: human, organization and technology-fit factors (HOT-fit). R20 International Journal of Medical Informatics. 2008;77(6):386-98. 29. Pagliari C. Design and evaluation in eHealth: Challenges and implications for an 7 R21 interdisciplinary field. Journal of Medical Internet Research. 2007;9(2). R22 30. Kaufman D, Roberts WD, Merrill J, Lai TY, Bakken S. Applying an evaluation framework for health information system design, development, and implementation. Nursing R23 Research. 2006;55(2 Suppl):37-42. 31. Van der Meijden MJ, Tange HJ, J. T, Hasman A. Determinants of success of inpatient R24 clinical information systems: a literature review. Journal of the American Medical R25 Informatics Association. 2003;10(3):235-43. 32. Kirsi T, Hervonen A, Jylha M. Always One Step Behind: Husbands’ Narratives about R26 Taking Care of their Demented Wives. Health (London). 2004;8(2):159-81. R27 33. Pollitt PA, Andersont I, D.W. OC. For better or for worse: The experience of caring for an elderly dementing spouse. Ageing and Society. 1991;11(4):443-69. R28 34. Bank AL, Arguelles S, Rubert M, Eisdorfer C, Czaja SJ. The value of telephone R29 support groups among ethnically diverse caregivers of persons with dementia. The Gerontologist. 2006;46(1):134-8. R30 35. Nolan M, Ingram P, Watson R. Working with family carers of people with dementia. R31 Dementia. 2002;1(1):75-93. 36. Atienza AA, Hesse BW, Gustafson DH, Croyle RT. E-health research and patient-centered R32 care examining theory, methods, and application American Journal of Preventive Medicine. 2010;38(1):85-8. R33 R34
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Practical guidelines Chapter 8
R1 R2 R3 R4 R5 R6 R7 R8 R9 R10 R11 R12 R13 R14 R15 R16 R17 R18 R19 R20 R21 R22 R23 R24 R25 R26 R27 R28 R29 R30 R31 R32 R33 R34
206 This chapter is meant to give practical recommendations for the use of eHealth in R1 dementia care. The recommendations are presented in order to increase the uptake R2 and, with that, the impact of eHealth in dementia care. They will be given in relation R3 to the results and conclusions from this thesis (chapters 2-7) within the structure of R4 the CeHReS roadmap (chapter 1). The recommendations themselves are described in R5 chapter 7. However, this chapter is intended to give a point-by-point account. R6 R7 contextual inquiry R8 The project manager starts by identifying the stakeholders and then creates a project R9 team in collaboration with these stakeholders. This project team will make decisions R10 about the need for support in dementia care. R11 R12 Checklist R13 • Define group of stakeholders R14 For example: People with dementia, family caregivers, professional caregivers, R15 policymakers, researcher, technician, project manager. R16 • Analyze the healthcare problem R17 For example: A residential care setting has a long waiting list for people with dementia R18 and would like to support people on this waiting list and even try to shorten the list. R19 • Analyze the needs of users in relation to a possible eHealth application R20 Literature (chapters 1 and 2) R21 Interviews R22 Questionnaires 8 R23 Observations R24 For example: People with dementia want to feel safe in their own home. People with R25 dementia do not want to be stigmatized. People with dementia sometimes show a R26 marked and rapid decrease in the symptoms of their disease. Professional caregivers R27 are not used to working with new technologies. R28 • Create a list for the healthcare organization outlining all the necessities: R29 Project team members should have enough time to spend on the R30 project (chapters 3 and 5) R31 Opinion leader is required for internal communication (chapter 4). R32 R33 R34
207 Chapter 8
R1 Involved occupational therapist is required if the people with R2 dementia have to learn to use the technology themselves (chapter R3 5). R4 Make timely contact with caregivers from within the family so that R5 they too can participate (chapter 5). R6 • Make a decision about the different responsibilities of the project team R7 members R8 For example: the policymaker should only be at the project team meetings at the R9 beginning and end of the project, the other people should be present at the project R10 team meetings all the time. R11 R12 Value specification R13 The stakeholders should make decisions and priorities regarding their values and R14 discuss the contribution of the technology. R15 R16 Checklist R17 • Decide the main values of the demands/solution and how eHealth R18 technology can support this. R19 For example: Create a feeling of safety for the person with dementia and their caregiver R20 from the family by making it possible for them to detect dangerous situations that R21 call for immediate action and create just-in-time care to prevent or postpone intake R22 into residential care and with that create cost savings. R23 • Discuss with stakeholders the potential contribution of the technology R24 related to the values to be achieved. R25 For example: Monitoring technology could detect situations requiring urgent R26 intervention and might be a possibility for the above-mentioned values. R27 • Discuss together with the users possibilities of support by technology R28 Use scenarios R29 Use demonstration models of possible technologies R30 For example: Show a person with dementia several technologies and ask them if this R31 helps them in their needs as determined at the contextual inquiry phase. R32 • Describe requirements for the technology R33 R34
208 For example: The technology should be plug-and-play, because of the possibility of R1 a quick decrease in the situation of the person with dementia, and with that the R2 possibility to move the technology out of the house. R3 R4 design R5 From the requirements a technology that is already available can be chosen or a R6 technology can be designed. R7 R8 Checklist R9 • Choose or design a matching technology; possibilities: signalling technology R10 (chapter 1), monitoring technology (chapters 3 and 4) and social contact R11 technology (chapters 5 and 6) or a combination of these technologies. R12 For example: Monitoring technology is a suitable technology to prevent urgent R13 situations; in this context we used ADLife technology. R14 • Involve all stakeholders in the design process of the selected technology. R15 Start with prototypes for the design of technology R16 • In the case of technology that is already available, before deciding to use it, R17 first carry out some research to see whether the technology is suitable in R18 relation to the needs of the users (chapter 3) R19 For example: Let the professional caregivers use the website to read out the data and R20 see how they use it and which comments they make. R21 • For technology for people with dementia themselves as end- users, create R22 the possibility of individual heuristics to choose from (chapters 5 and 7). 8 R23 For example: With an electronic agenda it might be wise to let the people choose for R24 a day-to-day agenda or weekly agenda. R25 R26 operationalization R27 In this phase the implementation plan will be made which will include actions for R28 the dissemination, adoption and incorporation, or internalization of the technology. R29 A business model can be developed for structural implementation in the day-to-day R30 practice of care. R31 R32 R33 R34
209 Chapter 8
R1 Checklist R2 • Start with specific, basic functionalities of the technology and expand to the R3 different functionalities later, so people first get the opportunity to get used R4 to the technology (chapter 5). R5 For example: For PAL4, first start using the agenda and after a few weeks start making R6 video contact. R7 • Create manuals in the language of the end-users and other groups that R8 might become involved (chapter 3). R9 For example: For ADLife a manual in the local language should be made for the people R10 with dementia as well. Even though they are not the end- users of the technology, R11 they still have the technology in their house and can get confused about flickering R12 lights, for example. R13 • Start to create input for a business model R14 Decide upon and focus on a business model (canvas model) R15 For example: Letting someone live at home for a longer period of time, change house R16 visits to video contact moments or create efficiency in residential care by having R17 fewer professional caregivers on duty during the night shifts. R18 Start collecting the figures that are required from the start of the R19 project (chapters 3 and 5). R20 For example: required figures for letting someone live at home for a longer period of R21 time: R22 Living at home: R23 - Homecare costs R24 - Purchase and installation of eHealth technology R25 - Subscription use of eHealth technology R26 - Service of eHealth technology R27 - Costs for professional caregivers using technology R28 Possibilities of extra costs by living at home: R29 - Implementation costs of the technology R30 - Grocery shopping R31 - Gas, water and electricity R32 - Health insurance and other insurances R33 R34
210 - Personal contribution homecare R1 - Monthly costs for internet, telephone and TV R2 - Town taxes R3 - Rent or mortgage R4 Nursing home: R5 - Monthly fee for living in a nursing home (in the Netherland R6 this is known as a ZZP) R7 Possibilities of extra costs in the nursing home: R8 - Health insurance or other insurances R9 - Extra costs for living in nursing home R10 A difference should be made between couples and people with R11 dementia who live alone, because if one person from a couple R12 going into a nursing home, the rent, for example, will still have to R13 be paid. R14 Use the model of Vermeulen et al. (2012)(6) whereby general R15 figures for taking care of a person with dementia are used, but the R16 exact costs of technology still have to be filled in (chapter 7). R17 • Create a possibility for the end-users to try out the technology in a demo R18 room R19 For example: For ADLife people should be able to come to a special room inside the R20 healthcare organization to see what the sensors look like and how they are attached R21 to the walls. Otherwise enable the professional caregiver who recruits the people R22 with dementia to take the sensors with them to show them in the houses ofthe 8 R23 people with dementia. R24 • Create embedding of the eHealth application in the daily care practice R25 Let people start to use the technology for a while to get used to R26 this (chapter 4). R27 Train professional caregivers to use and apply the technology in R28 daily practice(chapter 3). R29 After a few weeks decide, together with the professional caregivers, R30 how the eHealth technology could be implemented in the day-to- R31 day practice of providing care. R32 R33 R34
211 Chapter 8
R1 For example: for PAL4 people use it first for a while, then the professional caregivers R2 receive training in how to make good video contact and after a few weeks house visits R3 could be replaced by video contact. R4 • Decide about ethical situations R5 Let the person with dementia always know about the technology R6 used. R7 Decide about the role of the family caregivers in relation with the R8 privacy of the client. R9 If necessary let the ethical committee of the healthcare organization R10 decide about the technology. R11 For example: for the ADLife system the person with dementia should give their R12 permission for showing the data to the family caregiver once a month. If the person R13 does not give this permission the data will not be shared with family caregivers. R14 • Make inclusion criteria for people who are able to use the technology R15 Look at their personality, especially their willingness to learn R16 something new and no fear for technology R17 Look at age R18 Look at gender R19 Look at MMSE or other scores related to the phase of dementia R20 Look at the phase of receiving care; diagnosis, domestic support, R21 domestic care or nursing home (chapter 7) R22 Need to involve a family caregiver and the availability of such a R23 person (chapter 3) R24 If the technology is used at home and the technology is expensive, R25 decide how many months a person should have been forecasted as R26 likely to be able to stay at home (chapter 3 and 5). R27 For example: For ADLife people should be diagnosed with dementia, have an MMSE R28 score lower then 25, should not be anxious about the sensors in their house, should R29 be in the domestic care phase and should not be likely to be admitted to a nursing R30 home for the coming 4 months (because of the long waiting list). R31 • Give suggestions about the intended usage R32 R33 R34
212 For example: For reading out the data from ADLife, checking email alerts daily and R1 checking the data itself three times a week. R2 • Test the technology beforehand to prevent possible interruptions R3 For example: For ADLife use the sensors in the demo room installed to see if they work R4 and to see if the data get sent through the phone line in the right way. R5 • Plan the roll-out of the technology R6 For example for ADLife: all the installations will be done in two weeks’ time. R7 R8 summative evaluation R9 Uptake R10 • Evaluate the use, usage and motivation or capability of the person using the R11 technology R12 Log files (data about how much and/or how often a person uses R13 the technology) R14 Survey R15 Interviews R16 Etc. R17 For example: Evaluate the reasons of less or non- usage and evaluate for people with R18 dementia the stage of the disease where people are still able to use the technology. R19 R20 Impact R21 • Evaluate the main purpose they had for starting with the technology R22 • Fill in your business model and start talking about the results with 8 R23 policymakers R24 • Try to involve people who actually have dementia in the evaluation process R25 Use photos instead of words R26 Make observations R27 • Effects of eHealth R28 Assess performance and process (chapter 2-7) R29 R30 R31 R32 R33 R34
213
samenvatting (summary in dutch) Samenvatting
R1 R2 R3 R4 R5 R6 R7 R8 R9 R10 R11 R12 R13 R14 R15 R16 R17 R18 R19 R20 R21 R22 R23 R24 R25 R26 R27 R28 R29 R30 R31 R32 R33 R34
216 samenvatting R1 (summary in dutch) R2 R3 introductie R4 Dementie is een overkoepelende term voor verschillende ziektes, waarbij sprake R5 is van geheugenverlies. Dit geheugenverlies is geen onderdeel van het natuurlijke R6 verloop van het verouderinsproces. Dementie heeft invloed op het geheugen, R7 denken, gedrag en het omgaan met dagelijkse activiteiten. Alzheimer is de meest R8 voorkomende vorm van dementie. Andere vormen zijn bijvoorbeeld frontotemporale R9 dementie, vasculaire dementie en Lewy body dementie. Er zijn in totaliteit meer dan R10 50 verschillende vormen van dementie (Alzheimer Nederland, 2013). R11 In 2010 waren er wereldwijd naar schatting 35,6 miljoen mensen met dementie, op R12 dat moment 0,5% van de gehele wereldpopulatie. In 2050 is de verwachting dat er R13 wereldwijd 115,4 miljoen mensen met dementie zijn. Volgens Alzheimer Nederland R14 zijn er in Nederland momenteel 250.000 mensen met dementie. In 2050 dit zal dit R15 aantal, samenhangend met de vergrijzing, rond de 500.000 liggen. Ook mensen R16 onder de 65 jaar worden gediagnosticeerd met dementie, dit zijn momenteel rond R17 de 12.000 personen. R18 De kans dat iemand dementie krijgt in zijn leven, is 20%. Voor vrouwen isdit R19 percentage hoger (rond de 30%), omdat vrouwen gemiddeld genomen ouder R20 worden. Hou ouder men wordt, hoe groter de kans op het krijgen van dementie. Bij R21 mensen ouder dan 90 jaar heeft 40% dementie. R22 Kijkend naar deze sterk groeiende aantallen van mensen met dementie wereldwijd en R23 in Nederland, is er behoefte aan hulp om mensen met dementie te kunnen verzorgen. R24 De verwachting is dat met de teruglopende beroepsbevolking in Nederland niet aan R25 de zorgbehoefte van dementerenden kan worden voldaan. Daarnaast wordt veel zorg S R26 verleend door mantelzorgers (veelal familieleden). Echter, 82% van de mantelzorgers R27 is overbelast. R28 Het ’Wereld Alzheimer Rapport’ uit 2010 concludeert dat er investeringen in R29 onderzoek en kosteneffectieve methoden nodig zijn om goede zorg te kunnen R30 blijven bieden aan deze sterk groeiende groep van mensen met dementie. eHealth R31 kan hierbij ondersteunend zijn. eHealth staat voor de innovatieve toepassing van R32 R33 R34
217 Samenvatting
R1 informatie communicatie technologie (ICT) in de zorg, waarbij het volgens de definitie R2 van eHealth door Eysenbach (2001) niet alleen gaat om de techniek, maar ook om R3 de gedachtegang, houding etc. om gezondheidszorg te verbeteren met behulp van R4 ICT. Ook Alzheimer Nederland beschrijft het nut van het gebruik van eHealth in hun R5 ‘Zorgstandaard dementie’ van 2012. R6 Hoewel eHealth nog niet veel toegepast is bij dementie zijn er wel positieve R7 resultaten te noemen: minder belasting van de mantelzorger, bevordering van zelf R8 management van mensen met dementie, meer efficiency in de zorg, hogere kwaliteit R9 van leven voor mensen met dementie, minder valincidenten en de mogelijkheid voor R10 bijvoorbeeld bewoners van verpleeghuizen om vrij rond te kunnen lopen (Nijhof et R11 al., 2009). R12 Het doel van dit proefschrift is het geven van inzicht en advies voor de ontwikkeling en R13 implementatie van eHealth in dementiezorg. In dit proefschrift is literatuuronderzoek R14 verricht naar al bestaande onderzoeken op het gebied van dementie en eHealth. R15 Tevens is aan de hand van de CeHRes roadmap empirisch onderzoek verricht. Deze R16 CeHRes roadmap kan gebruikt worden voor zowel de ontwikkeling als de evaluatie van R17 eHealth om de adoptie en impact van eHealth technologie te vergroten (van Gemert- R18 Pijnen et al., 2011). De empirische onderzoeken in dit proefschrift zijn gericht op R19 monitoring en sociaal contact technologiën voor mensen met dementie. In totaliteit R20 zijn 4 verschillende eHealth technologieën beschreven in dit proefschrift, al deze 4 R21 technologieën zijn commercieel verkrijgbaar. Het betreft een monitoring (IST Vivago R22 watch) en sociaal contact technologie (Klessebessers) in een verpleeghuissitiatie R23 (intramuraal), en een monitoring (ADLife) en sociaal contact technologie (PAL4) in R24 de thuissituatie (extramuraal). In deze empirische onderzoeken stond centraal hoe R25 eHealth gebruikt wordt, of het gebruiksvriendelijk is, maar eveneens wat de impact R26 is op het welzijn van de persoon met dementie, de mantelzorger en de professioneel R27 zorgverlener. Tevens is gekeken naar de impact op de manier van zorgverlening en of R28 er kostenbesparingen zijn te realiseren door het gebruik van eHealth door mensen R29 met dementie langer zelfstandig thuis te laten wonen. R30 In hoofdstuk 2 wordt het literatuur onderzoek beschreven en in de opvolgende R31 hoofdstukken worden de empirische onderzoeken beschreven. Tot slot worden in R32 hoofdstuk 7 en 8 de conclusies beschreven en praktische aanbevelingen gedaan voor R33 het gebruik van eHealth in dementiezorg. R34
218 hoofdstuk 2: Quickscan R1 In dit hoofdstuk is een quickscan beschreven naar publicaties over eHealth in R2 dementiezorg op het gebied van implementatie en evaluatie, zowel internationaal R3 als nationaal. In totaliteit zijn 18 internationale en 8 nationale studies beschreven. In R4 deze quickscan is onderscheid gemaakt in technologie, welke mensen met dementie R5 en hun mantelzorgers helpt bij het omgaan met de symptomen van dementie R6 (bijvoorbeeld een foto telefoon, waarbij men alleen de foto hoeft aan te klikken om R7 een persoon te bellen); technologiën, welke de behoefte van mensen met dementie R8 op het gebied van sociaal contact ondersteunt (zoals een multimedia systeem waar R9 foto’s op bekeken kunnen worden, muziek luisteren etc.) en als laatste technologiën, R10 welke de gezondheid en veiligheid van mensen met dementie monitort (bijvoorbeeld R11 sensorentechnologie, die registreert of iemand in zijn bed slaapt). R12 De eerste resultaten uit de verschillende studies, zoals beschreven in deze quickscan, R13 zijn positief. Er zijn significante verbeteringen aangetoond op het gebied van de R14 kwaliteit van leven van de persoon met dementie en het effect welke de technologie R15 had op het gedrag van de persoon met dementie (zoals minder vallen). Ook R16 mantelzorgers bespaarden tijd met de technologie en hadden minder depressieve R17 gevoelens. De mantelzorgers en mensen met dementie zelf zijn tevreden over de R18 gebruiksvriendelijkheid van de technologie. Daarentegen zijn de aanschafprijs en R19 beheerskosten van de eHealth technologieën nog vaak te hoog. R20 Al lijken deze eerste resultaten positief, gedegen wetenschappelijk onderzoek R21 ontbreekt tot op heden naar het gebruik van eHealth in dementiezorg. Deze R22 quickscan toont ook aan in welke richting vervolgonderzoek nodig is, namelijk op R23 het gebied van gedegen opgezet onderzoek bij de inzet van techniek bij mensen R24 met dementie, hun mantelzorgers en zorgverleners. Hierbij rekening houdend met R25 de fase van dementie, de manier hoe zorgverleners met de techniek omgaan en de S R26 mogelijkheid tot besparingen in de dagelijkse zorg. R27 R28 hoofdstuk 3: monitoring technologie extramuraal R29 Dit hoofdstuk beschrijft het gebruik van het zogenaamde ADLife systeem voor mensen R30 met dementie. Dit is een preventief sensorensysteem, dat dagelijkse patronen R31 registreert om problemen bij mensen thuis tijdig te signaleren en hiermee gevaarlijke R32 R33 R34
219 Samenvatting
R1 situaties te voorkomen. Er is gebruik gemaakt van een personenalarmering, deur R2 sensoren, elektrisch verbruik sensoren, bedmat, stoelmat en bewegingssensoren. R3 In dit hoofdstuk worden de resultaten gepresenteerd van de evaluatie van het R4 gebruik van het ADLife systeem voor 9 maanden bij 14 mensen met dementie in de R5 thuissituatie. R6 Het onderzoek is zowel kwantitatief als kwalitatief: interviews met mantelzorgers R7 en professionele zorgverleners, observaties van de projectgroepbijeenkomsten, R8 analyse van dagboeken van de professionele zorgverleners en een kostenanalyse, R9 waarbij gekeken is naar het verschil tussen thuiswonen met thuiszorg en technologie R10 of opname in een intramurale setting. R11 Mensen met dementie en de mantelzorgers ervaarden een toename in het gevoel R12 van veiligheid door het gebruik van ADLife. ADLife ondersteunt de mantelzorger R13 en heeft de potentie om mensen met dementie langer thuis te laten wonen. In dit R14 onderzoek zijn twee ‘gevaarlijke’ situaties geconstateerd, een persoon die geen R15 avondeten meer at en een persoon die niet meer in zijn bed sliep. Tevens zijn er R16 besparingen aangetoond door het moment van opname in een verpleeghuis uit te R17 kunnen stellen. Indien 10 cliënten 2 maanden langer thuis kunnen wonen met behulp R18 van ADLife bespaart dit €23.665 en voor 50 cliënten is dit bedrag €124.122. Indien R19 een persoon met dementie echter meer thuiszorg nodig heeft, ligt het omslagpunt R20 dat opname uiteindelijk toch goedkoper is, bij €5000 thuiszorg per maand. Dit staat R21 gelijk aan bijvoorbeeld wekelijks 15u thuiszorg, 4u huishoudelijke verzorging, 3u R22 persoonlijke begeleiding en 20u dagopvang. R23 Een procesevaluatie toont verschillende aanbevelingen voor het gebruik van ADLife R24 in de toekomst: meer gedegen implementatie van ADLife in de zorgorganisatie, R25 de weergave van data kan verbeterd worden en meer ondersteuning voor de R26 professionele zorgverleners om te leren werken met ADLife in de dagelijkse R27 zorgverlening. R28 R29 hoofdstuk 4: monitoring technologie intramuraal R30 In dit hoofdstuk wordt een horloge dat het slaap- en waakritme meet van mensen R31 met dementie beschreven, aangezien mensen met dementie vaak een verstoord R32 slaap- en waakritme hebben. Het doel van deze studie is inzicht creëren in de R33 R34
220 effecten van het horloge op het slaap/waak ritme van mensen met dementie en het R1 proces van zorgverlening. Het horloge is bij 7 personen met een verstoord slaap/ R2 waakritme gebruikt in een intramurale instelling. R3 Ook bij dit onderzoek zijn zowel kwalitatieve als kwantitatieve onderzoeksmethoden R4 gehanteerd, variërend van interviews met de professionele zorgverleners, analyse R5 van het logboek van de professionele zorgverleners, observatie van gebruik horloge R6 tot aan analyse van de data van het horloge over de slaaptijd, slaapperiodes en de R7 verhouding tussen dag en nacht activiteit. Deze onderzoeksmethoden werden met R8 elkaar gecombineerd, indien het logboek een interventie toonde, welke door de R9 zorgverleners was uitgevoerd, werd de data van het horloge gebruikt om het effect R10 van de interventie op te zoeken op het slaap- en waakritme. R11 Er kan worden geconcludeerd dat het horloge de potentie heeft om het slaap- en R12 waak ritme van mensen met dementie te verbeteren. Het is niet zozeer het horloge R13 zelf dat deze verbeteringen mogelijk maakt, maar de interventies welke plaatsvinden R14 aan de hand van de data, die het horloge genereert. Zo toonde het horloge bij een R15 van de respondenten aan dat de inslaap medicatie om 21 uur gegeven werd en de R16 doorslaap medicatie om 0.00 uur, waarna deze persoon langere tijd wakker lag R17 (door het wakker maken voor de medicatie). Dit is aangepast nadat men dit door het R18 horloge inzag, waardoor de nachtrust van deze persoon verbeterde. Tevens kan het R19 horloge bijdragen aan een meer efficiënte zorgverlening. Een concreet voorbeeld R20 hierbij is dat er gedurende de nacht geen meerdere nachtrondes gelopen hoeven te R21 worden, echter alleen indien een persoon wakker blijkt te zijn hoeft de zorgverlener R22 er naartoe. De gebruiksvriendelijkheid van het horloge werd minder positief R23 beoordeeld, het horloge was erg groot en te log voor de vaak dunnere polsen van R24 oudere mensen. R25 Voor het opschalen van de bovengemoemde positieve effecten is het wel S R26 noodzakelijk dat er een infrastructuur aanwezig is, welke faciliterend is, er adequate R27 communicatie kanalen en de juiste condities voor implementatie aanwezig zijn. R28 R29 hoofdstuk 5: sociaal contact technologie extramuraal R30 Dit hoofdstuk beschrijft de evaluatie van het zogenaamde PAL4 dementie systeem, R31 een ondersteunend programma voor mensen met dementie, werkend op een R32 R33 R34
221 Samenvatting
R1 touchscreen. Dit programma bevat de volgende functies: agenda, levensalbum, R2 dagboek en een knop met informatie over dementie, de wijk, waarin men woonachtig R3 is, geheugenspelletjes etc. Tevens kon er met PAL4 videocontact gemaakt worden met R4 mantelzorgers en/of professionele zorgverleners. De evaluatie heeft plaatsgevonden R5 gedurende 9 maanden bij 16 cliënten bij twee zorgorganisaties in Nederland. Er R6 is gebruik gemaakt van kwalitatieve en kwantitative onderzoeksmethoden zoals R7 interviews met mantelzorgers en professionele zorgverleners, een focusgroep met R8 professionele zorgverleners, observaties van gebruik van PAL4, analyse van log files R9 en er is een kosten analyse uitgevoerd. De kostenanalyse is gericht op de effecten R10 van thuiswonen met thuiszorg en PAL4 ten opzichte van opname in een verpleeghuis. R11 Mensen met dementie en de mantelzorgers rapporteerden ondersteuning in het R12 dagelijks leven door PAL4. Men gaf aan dat het systeem zou kunnen bijdragen aan R13 het langer zelfstandig thuis wonen van de persoon met dementie. De kostenanalyse R14 laat een maandelijkse besparing zien van thuis wonen met PAL4 ten opzichte van R15 opname in een verpleeghuis van €820 per maand per cliënt bij 10 cliënten en €860 R16 per maand per cliënt bij 50 cliënten. Indien iemand met dementie echter meer R17 thuiszorg nodig heeft (rond de €5000 aan thuiszorg) dan zal iemand 11 maanden R18 langer thuis moeten kunnen blijven wonen, voordat PAL4 kosten effectief zal R19 zijn. Ondanks deze positieve resultaten werden er ook verschillende problemen R20 gedetecteerd: technische storingen, onvoldoende kennis van de professionele R21 zorgverleners over hoe PAL4 werkte, onvoldoende betrokkenheid van mantelzorgers R22 en een onvoldoende gebruiksvriendelijke lay-out van PAL4. R23 R24 hoofdstuk 6: sociaal contact technologie intramuraal R25 In dit laatste empirische hoofdstuk wordt een onderzoek beschreven naar het spel R26 de Klessebessers. Dagactiviteiten zijn van groot belang voor mensen met dementie, R27 eHealth wordt hier echter nog weinig toegepast. Bij dit spel werd gebruik gemaakt R28 van technologie als een tv, radio, telefoon en een schatkistje, waar de fragmenten R29 die door een activiteiten begeleider werden geselecteerd de interactie en het sociale R30 gedrag tussen de personen met dementie die het spel speelde, diende te bevorderen. R31 Het spel werd in een verpleeghuissituatie gespeeld, waar mensen woonachtig waren R32 of de dagopvang bezochten. Dit onderzoek betreft een observatie studie met een R33 R34
222 bestaande gedragsobservatieschaal en interviews met de activiteitenbegeleiders. In R1 deze studie is het spel de Klessebessers vergeleken met een ander soortgelijk spel, R2 Vragenderwijs, waar echter geen gebruik werd gemaakt van eHealth. Tevens is er R3 onderscheid gemaakt in de mate van dementie door gebruik te maken van MMSE R4 scores en is er gekeken naar het verschil tussen man en vrouw. In verband met het R5 kleine aantal respondenten is de statistische methode van bootstrapping gebruikt. R6 Er kon in deze studie geen groot verschil aangetoond worden tussen deze activiteit R7 waarbij eHealth gebruikt werd en een activiteit, waarin dit niet gebruik werd. Maar R8 het eHealth spel de Klessebessers creëerde en stimuleerde wel sociaal gedrag, R9 specifiek op het gebied van communicatie en empathie. Mensen met een hoge R10 MMSE score (minder ver gevorderd in proces van dementie) en vrouwen waren meer R11 actief tijdens het spel. Daarnaast bleek dat het gebruik van eHealth in activiteiten R12 ondersteunend kon zijn voor activiteiten begeleiders, omdat het onderwerpen R13 genereerde waar men over kon praten met de mensen met dementie. De inhoud R14 van de Klessebessers kan wel nog meer aangepast worden op jonge mensen met R15 dementie. R16 R17 hoofdstuk 7 en 8: conclusies, discussie en aanbevelingen R18 De resultaten uit de verschillende studies in dit proefschrift zijn gericht op het R19 gebruik van monitoring en sociaal contact technologie bij mensen met dementie. R20 Echter, de resultaten kunnen ook van belang zijn voor mensen met andere cognitieve R21 beperkingen of voor het gebruik van signalerende technologie. De resultaten zijn dus R22 breder inzetbaar. R23 De studies zoals beschreven in dit proefschrift laten positieve resultaten zien voor R24 het gebruik van eHealth in dementiezorg. eHealth kan het welzijn van mensen met R25 dementie en hun mantelzorgers bevorderen, kan het proces van zorgverlening S R26 ondersteunen en zorgt eveneens voor kostenbesparingen op het moment dat uitstel R27 van opname gerealiseerd kan worden. R28 Uit de verschillende studies komt naar voren dat implementatie een belangrijke R29 rol speelt bij het succes van eHealth. Deze implementatie kan op velerei gebieden R30 verbeterd worden bij het gebruik van eHealth in dementiezorg. Een belangrijker R31 leidraad hierbij is de CeHRes roadmap, waarbij verschillende fasen doorlopen worden R32 R33 R34
223 Samenvatting
R1 van de verkenning van wensen en behoeften, waarden specificatie naar design, naar R2 de daadwerkelijke operationalisatie en tot slot evaluatie. Speerpunten, die genoemd R3 kunnen worden bij een succesvolle implementatie zijn: een actieve projectgroep, R4 eHealth langzaam een structurele plek geven in de dagelijkse zorgpraktijk en daar R5 een passend business model bij genereren en als laatste vooraf nadenken over R6 ethische kwesties. R7 Eveneens kan het gebruik en de gebruiksvriendelijkheid van eHealth verder R8 bevorderd worden. Dit gebruik kan bevorderd worden door een richtlijn geven voor R9 het gebruik en eventuele herinneringen aan het gebruik. Dit is zeker bij mensen R10 met dementie essentieel. De gebruiksvriendelijkheid kan bevorderd worden door R11 de behoeften van de gebruikers af te stemmen op de techniek, waarbij specifiek R12 rekening moet worden gehouden met mensen met dementie. Zij hebben andere R13 behoeftes dan de normale senioren. In de verschillende studies in dit onderzoek zijn R14 de behoeften en achtergrond van de gebruikers niet afgestemd op de technologie. R15 Zo was het horloge zoals gebruikt om het slaap - en waakritme te meten erg groot R16 en ongemakkelijk voor de vaak dunne polsen van oudere mensen of was de data van R17 ADLife voor zorgverleners lastig uit te lezen. R18 Het welzijn van mensen met dementie en hun mantelzorgers wordt ondersteund R19 door de gebruikte technologieën in deze studie. Voorbeelden hiervan zijn een groter R20 gevoel van veiligheid en structuur voor de persoon met dementie. Echter heeft R21 eHealth in de studies in dit proefschrift bij mantelzorgers niet explicitiet gezorgd R22 voor een verminderde belasting. De belasting van zorg wordt vaak veroorzaakt door R23 het doen van boodschappen, financiële administratie etc., hierin hebben de eHealth R24 technologieën in dit proefschrift niet ondersteund. De welzijnseffecten zouden R25 vergroot kunnen worden door eveneens te kijken, welke type personen, gelinieerd R26 aan MMSE scores, geslacht, leeftijd en persoonlijkheid geschikt zijn voor het gebruik R27 van welke soort technologie. Hier dient uiteraard rekening gehouden te worden met R28 de individuele verschillen tussen mensen met dementie. Hiernaast dient technologie R29 vanaf het begin gekoppeld te worden aan de doelen die men wil bereiken met R30 de technologie. Indien ontlasting van de mantelzorger gewenst is, dient er eerst R31 gekeken te worden naar welke aspecten deze belasting teweeg brengen en hoe deze R32 belasting dus kan worden verminderd met behulp van technologie. R33 R34
224 eHealth kan ervoor zorg dragen dat de zorg ‘’just-in-time’’ wordt in plaats van ‘’just- R1 in-case’’, dit wordt tot op heden echter niet volledig benut. Dit heeft er ook mee te R2 maken dat een professionele zorgverlener in zijn werk gewend is om te ‘zorgen’, R3 maar niet om met technologie om te gaan en tevens niet om op basis van data uit R4 deze technologie zorgbeslissingen te kunnen maken. Hier dient veel meer aandacht R5 aan te worden besteed tijdens de implementatie. R6 Zoals beschreven in hoofdstuk 4 en 6 kan eHealth kostenbesparingen realiseren in de R7 zorg voor mensen met dementie, door het moment van opname in een intramurale R8 setting uit te stellen. De analyse, zoals heeft plaatsgevonden in dit proefschrift, laat R9 hier de eerste positieve resultaten van zien. Vervolgonderzoek is echter noodzakelijk, R10 waarbij ook meer inzicht moet worden gecreëerd in de kosten van bijvoorbeeld R11 iemand die thuis woont en boodschappen doet, de zorgverzekering betaald, een R12 eigen bijdrage betaalt voor zijn thuiszorg etc. Deze kosten voor bijvoorbeeld het R13 boodschappen doen, zijn er namelijk niet nadat iemand opgenomen is in een R14 verpleeghuis. Deze kosten zijn in de huidige kostenanalyse nog achterwege gelaten, R15 samenhangend met het feit dat deze kosten zeer lastig inzichtelijk zijn te krijgen. R16 Naar aanleiding van dit proefschrift is vervolgonderzoek wenselijk in de richting van R17 grotere aantallen respondenten, zodat meer kwantitatief onderzoek zou kunnen R18 plaatsvinden. Daarnaast is het wenselijk om meer expliciet de mening te vragen R19 van mensen met dementie zelf en dit niet via de mantelzorger of professionele R20 zorgverlener te vragen. Onderzoek bij andere doelgroepen met cognitieve R21 beperkingen en tevens andere technologieën, waaronder mobiele technologie R22 (smartphone, tablet) is als laatste ook van toegevoegde waarde. R23 R24 R25 S R26 R27 R28 R29 R30 R31 R32 R33 R34
225
dankwoord Dankwoord
R1 R2 R3 R4 R5 R6 R7 R8 R9 R10 R11 R12 R13 R14 R15 R16 R17 R18 R19 R20 R21 R22 R23 R24 R25 R26 R27 R28 R29 R30 R31 R32 R33 R34
228 dankwoord R1 R2 Een geweldige ervaring, dat zijn de afgelopen 4,5 jaar voor mij geweest, door het R3 kunnen combineren van praktijkwerk bij Focus Cura en het doen van onderzoek op R4 de UT. Mooie projecten begeleiden en dan eveneens kunnen onderzoeken wat de R5 effecten zijn van datgene wat je inzet. Tuurlijk heb ik ook zeker mijn ‘’dipmomenten’’ R6 gehad, maar al met al ben ik ontzettend blij nu dat ik nu zo’n resultaat als mijn R7 proefschrift voor mij heb liggen. Uiteraard was dit niet gelukt zonder alle mensen R8 waar ik de afgelopen jaren mee heb samengewerkt of die voor de nodige ontspanning R9 zorgde. Enkele mensen wil ik hierbij in het bijzonder bedanken. R10 R11 Ten eerste wil ik Lisette van Gemert, mijn dagelijks begeleidster, bedanken voor de R12 begeleiding de afgelopen jaren. We hebben de nodige discussies gevoerd, maar R13 nu achteraf zie ik in, dat alle stukken die nu hier in mijn proefschrift staan beter R14 geworden zijn door jouw aanvullingen, opmerkingen en overwegingen. Ik wil je R15 bedanken voor alle vrijheid die je mij altijd gegeven hebt gedurende mijn onderzoek. R16 Ik vond het ontzettend prettig om op die manier echt mijn eigen onderzoek vorm te R17 geven. Daarnaast sta je echt altijd klaar voor je aio’s, op elk moment van de week, R18 heb je een ongekende energie en enthousiasme! Dank je wel voor dit alles. Onze R19 directe samenwerking zal stoppen na mijn promotie, maar ik hoop dat we elkaar nog R20 vaak zullen tegenkomen in ‘’zorgland.’’ R21 R22 Erwin, mijn promotor, wil ik ook bedanken voor zijn begeleiding de afgelopen R23 jaren. We hebben elkaar niet met heel veel regelmaat gesproken, maar indien het R24 noodzakelijk was, kon ik wel altijd even bij je aankloppen. Het is geweldig hoe jij R25 mensen kan motiveren en inspireren. Dank daarvoor. R26 R27 Uiteraard wil ik ook graag de leden van mijn promotiecommissie bedanken voor de D R28 tijd en moeite voor het lezen van mijn proefschrift en het aanwezig zijn tijdens mijn R29 verdediging. Prof. dr. Andrew Sixsmith, thank you for taking part in my graduation R30 committee and for the wonderful time I had in Vancouver, Canada in 2011, when I R31 visited your research group. Prof. dr. Rose-Marie Dröes, prof. dr. Cees Hertogh, prof. R32 R33 R34
229 Dankwoord
R1 dr. ir. Hermie Hermens, dr. ir. Joost van Hoof en prof. dr. Marcel Olde Rikkert, we R2 zijn elkaar de afgelopen jaren meerdere malen tegengekomen in het werkveld van R3 dementie en eHealth en ik vind het dan ook een eer dat jullie deel uitmaken van mijn R4 commissie. Prof. dr. ir. T. de Vries, vooral in het begin van mijn promotie ben ik met R5 regelmaat in Leiden bij je op bezoek geweest om over mijn proefschrift te praten en R6 daarna gezellig samen met te eten, hartelijk dank hiervoor. R7 R8 Tijdens de gehele looptijd van mijn proefschrift ben ik bij Focus Cura werkzaam R9 geweest en dat is altijd een geweldige baan geweest, mede dankzij de leuke R10 collega’s en de vrijheid die mij geboden werd. Daan, dank je wel voor al je support R11 de afgelopen jaren en het gebruik mogen maken van je enorme netwerk. Speciale R12 dank voor mijn collega’s en oud collega’s, Anneloes, Eelko, Huub, Jorin, Jeroen van R13 der Heijden, Michel, Martie, Leendert-Jaap, Pia, Roel, Ruud, Stijn, Sabine en Yvonne. R14 Dank voor de fijne samenwerking en ontzettend veel gezelligheid. Milan, jij als oud R15 collega, ook bedankt voor het geweldige ontwerp van de kaft van mijn proefschrift. R16 Ook al ga ik Focus Cura verlaten, ik zal jullie allen oprecht missen! R17 R18 Naast mijn groep collega’s bij Focus Cura had ik ook een leuke groep collega’s bij R19 de UT. Ik was hier dan wel minder vaak aanwezig, maar wil jullie wel ontzettend R20 bedanken voor de fijne samenwerking de afgelopen jaren. De eHealth club is een R21 gemotiveerde en gezellige club, dank aan jullie allen: Hans, Jobke, Lex, Lisette, R22 Maarten, Marjon, Nicol, Nienke, Saskia, Maarten, Olga en Joyce. In het speciaal wil R23 ik mijn kamergenoten Nicol en Lex bedanken voor het oppeppen als het nodig was R24 en de hulp bij de verschillende vragen die ik jullie als ‘’al gepromoveerde’’ stelde. R25 Excuus, voor mijn belabberde zangkunsten die ik jullie wel eens ten gehore bracht! R26 R27 Tevens dank voor alle organisaties waar ik in mijn onderzoek mee heb samengewerkt, R28 Limez, SVVE Archipel en Zuwe (Erik Loeffen). Met speciale dank voor de projectgroep R29 bij ZZG Zorggroep; Esther, Bas, Ria, Ria en Hans en de projectgroep bij Bruggerbosch; R30 Henk Bijleveld, Marianne, Henk de Marie, Murk, Renate, Chantal en vooral Diana en R31 Trudy. Joost en Helma, jullie bedankt voor de leuke en vooral soms ook lachwekkende R32 uurtjes tijdens het ‘’Klessebessen’’. R33 R34
230 Tijdens mijn onderzoek heb ik hulp gehad van verschillende afstudeerders, zij R1 hebben een essentiële bijdrage geleverd aan mijn onderzoek. Els, Harmen, Marieke, R2 Pia, ontzettend bedankt voor jullie gedrevenheid en enthousiasme! Niet al jullie R3 onderzoeken heb ik volledig gebruikt in dit proefschrift, maar jullie onderzoeken R4 hebben allen waardevolle resultaten opgeleverd. R5 R6 Ja… en dan wil ik ook nog al mijn geweldige lieve vriendinnen bedanken. Lieve meiden R7 van thuis, Hely, Lotte en Simone, we kennen elkaar al zo onwijs lang en ik hoop dat R8 onze vriendschap nog tot ons 100e zal duren. Lieve meiden van Chiaro Divina, Anne, R9 Amke, Carolien, Karlijn, Pien en Valérie, dank voor alle super gezellige etentjes, R10 borrels, weekenden etc. in de afgelopen jaren, dat er nog vele mogen volgen. Lieve R11 meiden van Spooky, Anne Marie, Annalies, Bianca, Juul, Maaike en Maartje, ook jullie R12 bedankt voor alle etentjes, borrels en leuke momenten. Lieve meiden van de Mina, R13 Hanneke, Judith en Yvonne, we zien elkaar niet meer zoveel als vroeger, toen we R14 elkaar elke dag bijna wel zagen, maar het is nog altijd even gezellig als we elkaar zien, R15 dank jullie wel! Annemarijn, jou heb ik leren kennen via Focus Cura, maar inmiddels R16 hebben we het al over zoveel andere dingen gehad dan werk, dank je daarvoor! R17 Ik ben erg blij met zoveel lieve vriendinnen en ben ze allemaal dankbaar voor de R18 gezelligheid, steun en lieve woorden in de afgelopen jaren! R19 R20 Twee van mijn vriendinnen zijn eveneens mijn paranimfen, Maartje, dank je wel voor R21 alle momenten die we de afgelopen jaren ook samen hebben gehad op de UT. Het R22 was fijn iemand dichtbij mij te hebben die ook werk deed in de praktijk in combinatie R23 met onderzoek. Anne, wat ben jij toch een schat, altijd even bellen hoe het gaat, R24 ondanks je enorm drukke schema en altijd de Brabantse gezelligheid zelve ! R25 R26 Eveneens dank voor mijn lieve schoonfamilie die altijd oprechte interesse hebben R27 getoond in mijn proefschrift en voor alle gezellige momenten. Dank je wel, Jan, D R28 Sieneke, Erik, Willeke en natuurlijk Annemijn en Evelien! R29 R30 R31 R32 R33 R34
231 Dankwoord
R1 Lieve Elke, dank je wel voor het zijn van mijn lieve zusje en nu je ouder wordt steeds R2 meer sparringpartner over van alles en nog wat. Joris, mijn (bijna) zwager , wat R3 ben jij altijd enorm oprecht geïnteresseerd in wat ik deed en wat ben je lief voor mijn R4 zusje, dank je wel daarvoor! R5 R6 Pap en mam, jullie zijn er echt altijd voor mij en ik ben jullie daar enorm dankbaar R7 voor. Pap, dank voor het doorlezen van mijn gehele proefschrift en mam, dank voor R8 het altijd klaarstaan voor mij, Siev en Ties. Het is ook zo mooi om te zien hoe gek jullie R9 zijn met Ties! R10 R11 En dan als laatste, maar wel meest belangrijke, mijn twee mannen Lieve Sievert R12 Jan (laat ik hier maar netjes je gehele naam een keer schrijven…), ik kende jou net, R13 toen ik begon aan dit proefschrift en je hebt alle fases met mij doorlopen en jij hebt er R14 mede voor gezorgd dat ik nu dit eindresultaat kan afleveren. Je bent er altijd voor mij R15 en ik kan mij oprecht geen betere vriend wensen. Dank je wel daarvoor! Daarnaast R16 ben ik je natuurlijk eeuwig dankbaar voor onze zoon Ties! R17 R18 Lieve Ties, dank je wel dat je er bent! Je bent de liefste, mooiste en alles voor mij! R19 R20 R21 R22 R23 R24 R25 R26 R27 R28 R29 R30 R31 R32 R33 R34
232 eHealth for people with dementia in home-based and residential care Nienke Nijhof Uitnodiging
Vrijdag 26 april 2013 14:45 uur Prof. dr. G. Berkhoff Zaal De Waaier (gebouw 12) Steeds meer mensen met dementie, maar steeds minder mensen eHealth for people with Universiteit Twente werkzaam in de zorg. Op korte termijn zijn maatregelen noodzakelijk om goede zorg te kunnen blijven bieden. eHealth kan hierbij ondersteunend dementia in home-based Voor de openbare verdediging zijn. and residential care van mijn proefschrift: In dit proefschrift wordt inzicht en advies gegeven voor de ontwikkeling eHealth for people with en implementatie van eHealth in dementiezorg. Na een inleidend dementia in home-based literatuuronderzoek met betrekking tot implementatie en evaluatie and residential care van eHealth in dementiezorg worden een viertal eHealth projecten in dementiezorg geëvalueerd. De gebruikte eHealth technologieën zijn in Om 14:30 uur zal ik een korte te delen in monitoring en sociaal contact technologiën. De monitoring presentatie geven over mijn technologie omvat een preventief sensorensysteem toegepast in onderzoek. de thuissituatie van de persoon met dementie en een horloge, dat Na afloop van de promotie het slaap- en waakritme meet van mensen met dementie in een bent u van harte welkom op verpleeghuissituatie. De sociaal contact technologie is een ondersteund de receptie ter plaatse. touchscreen in de thuissituatie en een spel waarbij gebruik wordt gemaakt van technologie om sociaal gedrag bij mensen met dementie Nienke Nijhof in de verpleeghuissituatie te bevorderen. De eerste resultaten van de Sternstraat 9 toepassing van eHealth in dementiezorg zijn positief: ondersteuning in 3582TC Utrecht welzijn van mensen met dementie en hun mantelzorgers, verbeteringen [email protected] in de zorgverlening en kostenbesparing door uitstel van opname. 0642754512 www.dementietechnologie.nl
Paranimfen: Maartje Zonderland [email protected] 0653313247
Anne Lunenburg [email protected] 0616828729
Route: www.utwente.nl/route ISBN: 978-90-365-3455-0 Nienke Nijhof gebouw 12 parkeren P2